FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity

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FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity

Celebrating   Family Support   A week in
35 years of   Worker Ema       the life of
supporting    helps James’     a Family
families      family to deal   Support
              with complex     Worker
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
Dear                                                                            Contents
    Supporter                                                                       From the Chief Executive          2
    A huge thank you to all the
    generous organisations,                                                         Our Impact                        3
    volunteers and people                                                           What parents and
    like you that enable us to                                                      carers say                        3
    continue providing expert
    support to families with a                                                      What the children say             3
    life-threatened child.
                                                                                    Family Support Worker
    I also want to give my heartfelt                                                Shelly helped Teissy’s
    thanks to the newspaper the i for                                               family in their grief             4
    choosing us for their Christmas
    appeal. Thanks to this partnership                                              Family Support Worker
    and the generosity of the i readers                                             Ema supports James’ family
    we raised a phenomenal £146,000         We know our support is more
                                            critical than ever: in January we       as they deal with his
    from an initial target of £75,000.
    This could provide support for 82       asked families we support about         complex needs              6
    families for an entire year – a truly   their situation and in particular the
                                            impact of the COVID-19 pandemic.        Your support really matters       8
    amazing result.
                                            58% of parents said their mental
                                            health was worse or much worse          A week in the life of a
    This year we are marking 35 years
    of care – you can read more about       than before the pandemic, 30%           Family Support Worker             9
    how the charity began on page 11.       said that Rainbow Trust is their only
                                            source of professional practical and    Fundraising Heroes               10
    Our vision is that every family         emotional support, and a further
    in the UK who has a child with a        20% said they only have one other       Bernadette Cleary OBE:
    life-threatening illness receives       source of professional support.         Founding Inspiration              11
    the support they need. It has long
    been a strategic priority for us to     Our snapshot audit at the end           Ways to Fundraise                 11
    grow our care services to reach         of 2021 asked families to rate
    more families, both in the regions      our service provision and 92%           Celebrating 35 years of
    where we already support and in         of the families we support rated        supporting families              12
    new areas.                              our overall service as good or
                                            excellent. Families face enormous
    We have been extremely fortunate        strain when living with childhood
                                            illness and this makes the practical    Rainbow Trust Family Support
    to secure funding to establish care
                                            and emotional support that Family       Workers help families practically
    teams in two new locations; one
                                            Support Workers deliver critical for    and emotionally as they navigate
    in Liverpool to expand coverage
                                            families in crisis.                     the challenges of living with
    in the North West and into Wales;
                                                                                    childhood illness. To many of us,
    and one in Reading to boost care
                                            Thank you for all you do to help        family means everything so when
    provision in the South. When the
                                            families with a seriously ill child.    serious illness affects a child, and
    teams are in place later this year,
                                                                                    family life is turned upside down,
    it will take the total number of
                                            Best wishes                             this tailored and expert support
    care team locations across the
                                                                                    enables families to make the most
    country to eight, enhancing our
                                                                                    of their time together.
    face-to-face support with capacity
    for up to 160 additional families
    per year. This, along with our new                                              STAY IN TOUCH
    virtual support service, provides       Zillah Bingley, Chief Executive         Call us: 01372 363438
    the opportunity to significantly                                                Email us:
    increase our reach supporting                                                   supportercare@rainbowtrust.org.uk
    families in need across the UK.                                                 Visit us: rainbowtrust.org.uk
                                                                                    You can check our Privacy Policy at
                    Cover photo: Jack is one and has complex heart and              Follow us:
                    breathing difficulties. Between the age of seven weeks
                    and nine months old he was in hospital. Jack and his
                    family were supported by Family Support Worker Monica           Head Office address: Cassini Court,
                    from the North East Care team until they moved to a             Randalls Way, Leatherhead,
                    new location. They are now supported by Family Support          Surrey KT22 7TW
                    Worker Sophie from the North West Care team.                    Registered Charity No. 1070532.

2                                                                                                     FAMILIES FIRST
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
OUR IMPACT 2020/2021

     New families        Total families        Total hours           449
                           1,075               17,481

                                                                 families who felt
                                                                   better able to
                                                                  cope had their
                                                                   cases closed

        Hours of                                Hours of
    parental support        Hours of            hospital            Hours of
       or respite           transport           support           home support

       1,687               1,279                 512               5,333              Figures from Our Impact,
                                                                                      covering July 2020 to June
                                                                                      2021. You can download
                                                                                      a full copy and watch
                                                                       Hours of       our impact video here:
       Hours of              Hours of                                                 rainbowtrust.org.uk/
                              virtual              Hours of           support for
      telephone                                sibling support       the sick child   our-impact

                                                 1,822                1,583

      5,337                 1,194
WHAT PARENTS                                                          WHAT THE
AND CARERS SAY                                                        CHILDREN SAY
“   I love the support my family has received since
my boys were born. I cannot fault the service as it has
allowed me to visit my son in hospital as well as having
                                                                      If I had a magic wand I would…
                                                                      	be better and be home in my own
                                                                        room - then fly to Disneyland with all
the relationship with the Family Support Worker when                    my family and get fat eating lots of
I can rant or cry if I need to and it really does help                  delicious food
so much. If I’m ever stressed or anxious, I always feel               	turn my house into a pirate ship
better after talking it through with my Family Support
Worker on our way to the hospital - I don’t think I
                                                             “        	have a million puppies
                                                                        and one horse
would have been able to cope without Rainbow Trust.
                                                                      	just eat a sweetie at school to make

                                                                        you learn all your education and can
     My Family Support Worker’s help to me has been                     just stay and play with your friends
massive, especially when I’m feeling low, unsure and                  	
                                                                       magic up a bunny that can walk and
stressed. Her presence is calming and gives the children               eat everything
support to grow within themselves. The help and
support to go and do ‘normal’ activities that by myself I
                                                                      	change my Family Support
                                                                        Worker into a frog and
wouldn’t be able to do.
                                                                        she can eat flies
                                                                      	be able to eat everything I want and

                                                                        have a pink and purple shoe with
     My Family Support Worker is the best person to
                                                                        glitter following me everywhere
make all of us happy with ideas and lots of support for
our family. She is loving, caring, kind and has lots of skills
                                                                           79% of siblings who responded to
regarding children and professional family support.
                                                                           our audit selected
                                                                           ‘My Family Support Worker helps
When asked how much of a difference Rainbow Trust                          me spend more time with other
made to their lives 92% rated the positive difference                      children or people outside of the
as eight, nine or 10 out of 10.                                            family’.

FAMILY MEANS EVERYTHING                                                                                            3
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
    Teissy tells us about the death of her daughter
    Ki Ki and the support her son Kingston needed

    Ki Ki, Kingston’s little sister,
    was born in October 2015.
    Aged almost three years
    she became really unwell
    in 2018. She was diagnosed
                                               We didn’t know how long
                                               Ki Ki would live. On top of the
                                               devastating news and having to
                                               learn how to look after Ki Ki being
                                               so ill, we decided to also focus
                                               on making her life the best it
                                                                                          Rainbow Trust Family Support
                                                                                          Worker Shelly started supporting
                                                                                          our whole family, but focusing on
                                                                                          Kingston. As my partner Adam and
                                                                                          I spent more and more time with
                                                                                          Ki Ki we had less time with
    with Leigh’s disease (a                    could possibly be and on creating          Kingston, who was just six. He
    progressive neurological                   memories for us all.                       needed one-to-one time, moments
                                                                                          when he could be himself and also
    disorder) and a severe
                                               We wanted to make memories                 have fun.
    type of scoliosis in                       so we went on different holidays
    February 2019.                             to enjoy as a family and Ki Ki’s           Shelly would spend time with
                                               personality shone through, she was         Kingston to provide an outlet;
    Whilst Ki Ki was seriously ill in          a real social butterfly.                   in their sessions he was able to
    hospital and we had this terrible                                                     express how he was feeling and
    diagnosis, the hospital team               The diagnosis and situation                voice his worries and concerns.
    referred us to Rainbow Trust.              changed us all.                            We started to see a real difference
                                                                                          in him. It was evident that Shelly’s
                                                                                          support was very beneficial for him
                                                                                          and made him feel special.

                                                                                          Shelly also took Kingston out with
                                                                                          other siblings of very ill children.
                                                                                          This helped him understand that he
                                                                                          wasn’t alone and also helped him
                                                                                          make new friends.

                                                                                          Shelly made us all feel at ease.
                                                                                          She is very inviting and
                                                                                          conversations happen naturally
                                                                                          with her. I didn’t mind telling her
                                                                                          how I was feeling. I didn’t mind
                                                                                          sharing thoughts or feelings that I
                                                                                          would not even tell my family.

                                                                                          There was a unique difference
                                                                                          from other organisations that
                                                                                          provided some support: Shelly
                                                                                          knew the whole family and what
                                                                                          we were all going through. Other
                                                                                          organisations didn’t understand
                                                                                          the whole situation. With Shelly
                                                                                          it was different, she understood
                                                                                          everything that we were going
                                                       Kingston and Ki Ki in Disneyland

     Scoliosis is the deviation of the normal curvature of the spine.
4                                                                                                           FAMILIES FIRST
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
Adam, Ki Ki, Kingston and Teissy                     Kingston painting a rock in memory of Ki Ki
                          enjoying a special family moment                               and one for his little sister Khailani

through. She really cared.               only shared it with Shelly.
Very quickly Shelly became our           While looking after Ki Ki Adam
constant and stable support.             and I had a good routine. All this
                                         disappeared when Ki Ki died.                                              xxxxxxxx
It pains me to say that in March         Adam was very angry, very upset. I
2020, two weeks before the               dealt with it in a different way. I felt
country went into the first national     sad and depressed. I was mad at
lockdown, Ki Ki sadly died.              Adam for shutting me out. Shelly
                                         also helped with these feelings.
For us, things became very               Shelly explained that there’s no
different. Relationships with people     right or wrong way to grieve. His
changed. On a normal school run,         way of grieving was just as valid
people would avoid me, look away         as mine.
and pretend they hadn’t seen me.
                                         18 months after Ki Ki died I gave
People felt uncomfortable as they        birth to my daughter Khailani. She
didn’t know how to react to me.          is 14 weeks old and Kingston is
They didn’t want to ask ‘Are you all     really good with her but, as he has
right?’ because of course I wasn’t       gone through the trauma of losing
all right and I will never be. Nothing   Ki Ki, he also worries about Khailani.             Ki Ki and her favourite doll, who
will ever be the same.                                                                              had a nasal tube like her
                                         Shelly’s help felt like someone from
Rainbow Trust was the only               outside our family cares and wants
organisation that supported us           to help us get through this really            Leigh’s disease is a disorder
throughout; Kingston’s school            difficult time, when we did not               that affects the central
offered some bereavement support         know how to deal with it all.                 nervous system (brain,
but it wasn’t constant and it only                                                     spinal cord and optic nerve)
lasted for a couple of weeks.            Losing a child is the worst                   deteriorating movement,

Kingston and Ki Ki were just 14
months apart and were very
close, they had a really good
and special bond.
                                         experience a parent can go through
                                         and Shelly helped me to start
                                         accepting my loss and to grieve.
                                         Shelly gave Kingston the space he
                                         needed to learn to live with the pain
                                         of losing his little sister.
                                                                                       posture and mental abilities.
                                                                                       Some signs may be poor
                                                                                       sucking ability, the loss of
                                                                                       head control, loss of motor
                                                                                       skills and seizures. Some
                                                                                       children may have a period
Ki Ki’s death had a big impact on                                                      of normal development
Kingston. He started having night                                                      before being affected by this
terrors, was unable to sleep and                                                       disease. It is a progressive
was having a really difficult time.                                                    disorder that usually happens
Kingston is so considerate that                                                        in early childhood and life
he didn’t want to talk to us about                                                     expectancy is two or three
what was happening with him and                                                        years after diagnosis.
how he was feeling as he didn’t
want to upset us. He didn’t want                                                       rainbowtrust.org.uk
to worry us so he kept it all in and                                                   /donate-magazine

FAMILY MEANS EVERYTHING                                                                                                           5
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
    Nothing prepares parents to deal with childhood illness
    so Ema is helping to improve the family’s quality of life

    During a pre-eclampsia
    examination at 28 weeks,
    when Danielle was
    pregnant with her second
    child James, the doctors
    discovered that the baby’s
    heart beat kept dropping to
    a dangerous level, unable
    to bring it back up. Danielle
    had to be induced, which
    meant James was born 12
    weeks prematurely.
    James was in hospital for the first
    four months of his life. When he
    was finally discharged, he needed
    home oxygen treatment and to be
    fed through a tube as his breathing
    is compromised due to suffering
    chronic lung disease.

    Since birth James has had complex
    needs and requires looking after
    24 hours a day. James is non-
    verbal, has low muscle tone and
    is unable to eat or drink anything.
    Nothing prepares a parent for                                     Danielle, James and Ema enjoying the sunshine
    this. Danielle says: “The world
    stopped when James was born           being in and out of hospital. Ema       “Ema has made our life easier as
    as we weren’t expecting a child       has been helping them to have fun       we have been able to do things
    with such complex needs. He           despite the day-to-day difficulties     as a family. She has made our
    weighed just 1lb 4oz. James had       they face. These play sessions          daughter feel special.
    a bleed on his brain at three days    also provide an opportunity to
    old which has caused cerebral         give emotional support to both          “James prefers to play on his own,
    palsy, developmental delay, visual    children. For Bella monthly one-        but he is also building his social
    impairment, hydrocephalous* and       to-one sessions give her focused        skills with Ema and will sometimes
    many other conditions.”               “me” time. These sessions have          choose to play with her, he has
                                          boosted both children’s confidence      started to initiate play.”
    Danielle and her husband Chris        and social skills.
    heard about Rainbow Trust                                                     Ema also helps to improve the
    through their Community Nurse,        “Bella enjoys it when Ema comes         family’s overall quality of life by
    and they have now been receiving      over to see her, as she finds it hard   providing much needed emotional
    support from Family Support           to build relationships with other       support for Danielle at home
    Worker Ema for nearly three years.    people. She has been diagnosed          and over the phone. Danielle was
    Ema met James when he was             with autism, and without Ema’s          diagnosed with Post Traumatic
    eight months old. Her support was     help we wouldn’t have spotted           Stress Disorder (PTSD) due to
    originally mainly for James and       the signs and pushed for an             the trauma of James’ birth, the
    his now nine-year-old sister Bella,   assessment and support at school,       difficult first few days of his life
    who found it hard with James          which she now has.                      and his numerous conditions. With

    * A build-up of fluid in the brain.
6                                                                                                   FAMILIES FIRST
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
James’ sister, Bella, proudly shows        Ema plays with James, helping      James in an incubator in hospital
           biscuits baked with Ema                increase his social skills

both counselling and Ema’s help        had to undergo two brain
Danielle has started to overcome       surgeries. The seriousness of the
her PTSD. Ema’s emotional support      operations was made clear to
has focused on helping Danielle to     Danielle and Chris when they were
have more confidence in general        told that if anything went wrong
and specifically around looking        James could end up paralysed or
                                                                               Family means
after James, empower her to share      could have a stroke.                    everything.
more responsibilities with her
husband, Chris, and to allow herself   Ema picked them up from home            Having a child with complex
more time to heal emotionally.         at 6am and dropped them off at          needs is tough on parents;
                                       the hospital at 7:30am for the first    the everyday workload may
Over the last three years, James       operation. Two weeks later James        feel relentless and the whole
has been in and out of hospital.       was in pain again and the local         family may feel isolated. The
This, together with the numerous       hospital sent him in an ambulance,      experience could become
medical appointments, presents         on a ventilator, to John Radcliffe      emotionally and physically
many challenges for the whole          hospital as an emergency. There         draining. Rainbow Trust Family
family. As the family waits for a      was so much equipment that there        Support Workers like Ema help
mobility vehicle Ema provides          was no room for Danielle in the         the whole family, tailoring the
transport so they don’t have to        ambulance. She was told to make         support to each family member,
worry about booking and paying         her own way – so Danielle called        in the hope that we can make
for taxis, traffic jams and delays     Ema, who was able to help and           life a little easier, giving them
and can just focus on James.           took her immediately. Fortunately,      time to focus on what matters
                                       the second operation went well          the most to them.
As James’ brain is so fragile a        and James went home later to
fall on a hard floor could be very     continue his recovery.
dangerous so Ema helped the                                                         Help families and sponsor a
family to secure funds to lay carpet   “Rainbow Trust makes you realise             Family Support Worker like
throughout the whole house.            that you’re not alone and that          Ema today. Your sponsorship
                                       there are many other families who       will enable families who have
At the end of 2021 James started       are in the same situation. The          a child with a life-threatening
passing out, losing control of his     Family Support Workers can guide        illness to make the most of time
limbs and body and, as he is non-      you to a more positive outcome in       together because family means
verbal, he was pressing the back       your life.                              everything.

of his head with the palms of his
hands. Unable to express what was
happening to him this showed he            Ema has gone                        sponsor-us

                                       above and beyond to
was having pain and discomfort.
This was due to a cyst on his brain.
The cyst was causing a blockage
and fluid was accumulating,            help us. Ema is our own“
increasing pressure in his brain.      Nanny McPhee!
Because of this, James recently

FAMILY MEANS EVERYTHING                                                                                            7
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
    Your support helps change lives
    Some of the children and families you have
    helped us support during the past months.
                                                                        Rachael and Thomas’               Family Support Worker
                                                                      brother suffers from a           Ema and Max had a painting
                                                                      degenerative condition.          session together. Max’s twin
                                                                      Family Support Worker            sister has a narrowing of the
                                                                      Sophie took them on an           airway above her trachea and
                                                                      alpaca walk along the            has a tracheostomy.
                                                                      Keswick hills for a very
                                                                      different support session.

                                                                                                          Sonny, 15, who has Duchenne
                                                                                                       Muscular Dystrophy, enjoyed
      Musa, four, has recovered                                                                        carving and decorating his
    from a brain tumour but is                                                                         ‘three-faced’ pumpkin with his
    still under treatment. Musa       Vanessa, who has sickle           Family Support Manager         Family Support Worker Georgia.
    had a hospital appointment      cell anaemia, having fun          Sean went to see Mia, seven,
    so Family Support Worker        with her siblings and Family      and Maisie, nine, and baked
    Monica took his siblings Eisa   Support Worker Sabrina at         a lovely cake. Mia had an
    and Nooriya to soft play.       the beach.                        acquired brain injury that
                                                                      lead to cerebral palsy and
                                                                      complex health needs.

                                                                            Marrveen, eight, at the
                                                                          park with Family Support
                                                                         Worker Sarah. His brother
                                                                       Raynnav, three, has a serious
                                                                          condition that affects his

                                                                                It is only thanks to your generosity
                                                                                and support that we can help
                                                                                families with a seriously ill child
                                                                                The families we support face difficult and
                                                                                challenging circumstances whilst they care for
                                                                                their life-threatened child.
                                                                                 Family Support Workers tailor the support they
                                                                                provide to each family. From key practical and
                                                                                emotional support to the parents to giving the
                                                                                ill child and brothers and sisters a break with
                                      Family Support Worker                     outdoor activities and fun, playing, doing arts
      Henry, seven, has been        Sarah has supported Amelie’s                and crafts, reading and providing a safe space
    learning to lip read with       family for over six years doing             to talk. These sessions give the parents some
    Family Support Worker           school pick ups and holiday                 respite and help the children to have some
    Mandy. Henry lost his hearing   support for her and her three               normality, at the same time as they improve their
    due to his Mitchell syndrome,   siblings. Amelie’s brother,                 wellbeing and increase their self-esteem.
    a progressive disorder.         Mason, 17, has a brain tumour.
                                                                                Thank you for all your support.

8                                                                                                                FAMILIES FIRST
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
  Georgia is a Rainbow Trust Family Support Worker in the
  Southampton Care team and shares a typical week with us
  By Georgia Cooper                                      Some names have been changed.

  MONDAY:                                told me all about his day, and how      diagnosed with a serious heart
                                         excited he was that he got to see       condition. His mum asked me
  I was in Bournemouth today
                                         me today. At home, we played lots       if I could take him to watch the
  visiting Tony and his family. Tony
                                         of board games together and his         new Spider Man movie so that he
  is 14 years old and has Sanfilippo
                                         mum and dad joined us for some          could have some fun whilst she
  Syndrome, a progressive disorder
                                         of them, which he seemed to             got on with some jobs around the
  which means that he has very little
                                         really enjoy. I spent time with his     house. We spent a few hours at the
  mobility, is non-verbal and his mum
                                         mum, and she showed me some             cinema, then we walked around
  is his full time carer. I collected
                                         photos and videos of Teddy and          town to browse in some shops. We
  Tony’s sister Amelia, nine, from
                                         his brother that she had captured       chatted about all the new Marvel
  school and walked her home, we
                                         over the last week which made her       films that are coming out soon.
  chatted about how her day was
                                         beam with pride.                        On the drive home Ben said that
  and all the amazing things she has
                                                                                 he really enjoyed spending time
  been learning about.
                                         WEDNESDAY:                              with me today and that he cannot
                                                                                 wait for my next visit. His mum
  Once home, I was able to talk          Neonatal care has been especially
                                                                                 was very appreciative and said
  with their mum about how the           difficult during the pandemic for
                                                                                 that it allowed her to have some
  whole family had been since my         parents of premature or seriously ill
                                                                                 time to herself to do things that
  last visit. Today’s session with       babies. Visiting can be complicated
                                                                                 she wouldn’t have been able to do
  Amelia was more of a sensory           by the distance that parents may
                                                                                 while looking after Ben.
  experience, where we made some         need to travel to see a seriously ill
  slime together – which she really      baby. Short and infrequent visits
  enjoyed – and then we played with      can create a barrier to caring and       FRIDAY:
  her Lego.                              bonding activities which can assist
                                                                                 On Fridays we have a team
                                         in a baby’s development.
                                                                                 meeting in our Southampton
  Sibling support is a really
                                         We support many parents with            office, where we all come together
  important part of our service. It
                                         seriously ill babies, and today I       and share any latest information
  can play a vital preventative role,
                                         drove to Salisbury to collect a         within the team and Rainbow Trust.
  helping children to learn coping
                                         mum from her home and took              We also get the opportunity to
  mechanisms, find an outlet for their
                                         her to Princess Anne Hospital in        share how our week has been, talk
  strong feelings and worries, build
                                         Southampton so that she could           about the families that we have
  a support network – as well as
                                         see her baby, who was born              been able to support during that
  having some much needed fun. My
                                         prematurely at 27 weeks.                week and exchange ideas on how
  visits with Amelia are very much
                                                                                 to improve or address anything
  play and craft-based and allow         Currently she can only see her
                                                                                 that may seem difficult.
  her to talk openly to me about any     baby twice a week, as travelling
  worries that she may be feeling        to and from the hospital is
  regarding school or her brother        difficult without support. On
  Tony, in a safe space while doing      the way there I provided some
  the things that she loves.             emotional support, I listened to                Family Support Workers
                                         her talk through her concerns                   like Georgia help families
  TUESDAY:                               as well as the positives                with a seriously or terminally ill
                                         surrounding her baby and home           child practically and emotionally.
  Today I was invited to a school
                                         life. Once I had dropped her            It’s only thanks to your donations
  in Southampton that Teddy, five,
                                         off, it allowed her to have a           that we can give life-threatened
  attends to be presented with a
                                         few much-needed hours with              children and their families this
  cheque. The school had raised
                                         her baby. I then collected her          expert support for as long as
  money for Rainbow Trust over
                                         from the hospital and drove             they need it. Sponsor a Family
  Christmas and wanted to donate
                                         her back home to Salisbury,             Support Worker like Georgia
  it to a charity that supports Teddy
                                         where we chatted more                   today. rainbowtrust.org.uk/
  and his family through his cancer
                                         about her baby’s progress.              sponsor-us
  diagnosis. I met the head teacher
  and spoke about what we could
  do to work together to continue to     THURSDAY:
  support the family.
                                         I drove to Fleet this morning
  Afterwards, I collected Teddy and      to visit Ben, who is 12 years
  drove him home from school. He         old and has been

FAMILY MEANS EVERYTHING                                                                                               9
FAMILIES FIRST SPRING/SUMMER 2022 - Inside: Rainbow Trust Children's Charity
FUNDRAISING                                                                 THE i CHRISTMAS
                                                                                 CHARITY APPEAL
     HEROES                                                                      Our heartfelt thanks to the i and
                                                                                 its generous readers that helped
                                                                                 raise over £146,000 with the i’s 2021
                                                                                 Christmas Appeal. When we first knew
                                                                                 we had been selected for the appeal
                                                                                 we thought £75,000 would be an
                                                                                 impressive amount, so to have nearly
                                                                                 doubled it is truly brilliant.

                                                                                 This is enough for Rainbow Trust to
                                                                                 provide support to 82 families across
                                                                                 the UK for a year to help them cope
                                                                                 with the emotions and practicalities of
                                                                                 having a seriously ill child. Thank you.

                                                                 The St Cuthbert’s Society
                                     Denise did a 10 mile walk   at Durham University raised
     St James Group Ltd, part        throughout Durham in        £1,000 over two weeks of
     of the Berkeley Group, did      December (it was only 3     fundraising activities that     Coffee shop Bob & Berts in
     a Santa relay run along the     degrees) and raised £967.   included a bingo night, pub     Lancaster raised over £1,038
     Thames river in London in                                   quiz, silent disco, karaoke     during December by asking for
     December raising over £1,200.                               and ice bucket challenge.       charity donations at the tills.

                                                                                              l l o u r a m a zing
                                                                                         To a            s
     Hook with Warsash C of E Academy’s Head Teacher Sarah
                                                                                         supporter isers
                                                                                          and fundra
     Willoughby hands a cheque for £410.05. The money was        V Cars Chippenham
     raised as Teddy is being supported by Family Support        donated a generous

                                                                                                       y o u !

     Worker Georgia.

                                                                                               tha n

     London’s West One Shopping Centre staff raised £1,287 by    Reed’s School in Surrey held a Fun Santa Run in
     holding a ‘One Great Day’ bucket collection.                December and raised £1,108.

10                                                                                                        FAMILIES FIRST
35 years later we keep going strong
In the autumn of 1981 a neighbour     Word got around about how
came to Bernadette’s door and         Bernadette had supported Rachel
asked if she could help a young       and Maureen and she started
girl who had come home to die. It     travelling round the country helping
was a tragic case. Rachel had been    other families in a similar situation.
diagnosed with cancer when she                                                   Our new virtual support
was six, successfully treated and     Bernadette is married to Dennis            service consists of play
then, when she was 12 years old,      and they have three children. As           sessions which start after
the cancer returned. When Rachel’s    well as that they have fostered over       a support pack is delivered
father, an accountant who had         50 children. Bernadette set up             to the family. Each pack
been happily married to Maureen       Rainbow Trust in 1986, working
                                                                                 contains a puppet, paper, art
for 18 years, heard the news that     from a shed at the bottom of the
                                                                                 materials and play dough, toys
his only child was dying he went to   garden. She and Dennis personally
                                                                                 to relieve anxiety and boost
work one day and never returned       funded all of her travel to families
                                                                                 concentration, and an emotions
home, leaving Maureen, a teaching     with a seriously ill child while friends
                                                                                 journal. With this, the children
assistant, to cope alone.             pitched in with coffee mornings.
                                                                                 can be creative and play at the
                                                                                 same time as they understand
When Bernadette met Maureen           Bernadette’s vision was to make
                                                                                 their worries and emotions.
and her daughter they were in a       the movement bigger, to be able to
                                                                                 Virtual sessions enable children
terrible state. Rachel had checked    reach more seriously ill children and
out of the hospital, against her      their families.                            to have one to one support and
doctors’ wishes to die at home. Her                                              parents to have some respite
local GP refused to treat her, she    35 years on, and supporting over           or some time to look after their
had no pain relief drugs and when     1,000 families each year, we are           other children.
Bernadette first saw Rachel she       expanding our reach with two
was in excruciating pain.             brand new teams, one in Liverpool
                                      and the other in Reading. We have
Bernadette’s first action was to      continued to innovate and now
wait a whole day in hospital to see   also provide virtual support,
Rachel’s consultant who was so        allowing us to work with families
shocked by the situation that he      where we may not have a care
made his first ever home visit to     team on the ground.
give Rachel pain-controlling drugs.
                                      Here’s looking forward to the next
Bernadette was there to help and      35 years.
support them, comforting both           Read more about the expansion               A virtual support pack costs
and consoling Maureen when              at rainbowtrust.org.uk/news                 £60 and is sent to the family
Rachel died.

                                                                                                  free of charge

     to f u n
Ways           Skydive 35                                                                Do the Distance
                            We are looking for 35                                        Challenge yourself and
                            brave people to sign up                                      take on this virtual
                            and jump for us between                                      challenge by running,
                            6 and 12 June 2022.                                          walking, cycling or
                                                                                         swimming the distance

  SKY 35
                            Help us to celebrate our           Liverpool
                                                                                         from Liverpool to
                            35th year and tick off the                                   Reading to help us reach
                            experience of a lifetime.                                    more families in these

  DIVE                      Imagine the rush as
                            you free fall at 125mph
                                                                                         new areas – an impressive
                                                                                         180 miles.
                            from 10,000 feet above
                            the ground, all whilst                                       Do something amazing
                            raising vital funds to help                Reading           and go to
                            Rainbow Trust reach                                          rainbowtrust.org.uk/
     35 jumps for           even more families with a                                    events
     35 years of care       seriously ill child in 2022
                            and beyond.

FAMILY MEANS EVERYTHING                                                                                              11
We start
                                                                                                                           It’s About Time strategy
                                                                                             delivering a
                                                                                                                           launched to support future
                                                                                             new online
                                                                                                                           expansion plans to reach
                                                                                             care service
                                                                                                                           more families in need
                                                                                             faced with
                                                                                             COVID 19
                                                                                             restrictions                        2019
                                                            2021                                          2020                                    2018
                                                      We confirm future plans                        We establish our first                   We publish Hidden
                                                      to open new care teams                         formal partnership with a                Savings showing that
                                                      in Liverpool and Reading                       hospice (Shooting Star                   our service saves the
                                                                                                     Children’s Hospice) to jointly           health and social
                                                                                                     deliver support to families              care system at least
                                                                        Our pilot for                                                         £2 million each year
                            West London Care                            specialist neonatal
                            Team launched                               care begins

                              2010                                      2014
      2009                                        2012                                           2016
  To focus all resources on                       We start to                                We launch a specialist support
  family support, we close                        support families                           service for children with serious
  Rainbow House                                   in Central London                          heart conditions
  and Rainbow Fernstone

  We contribute to the government’s
                                              Better Care, Better Lives, the
                                                                                                   The economic impact of Rainbow Trust’s support is
  independent review of palliative            first national strategy for children's               quantified for the first time by York Health Economics
  care services for children and              palliative care is published                         Consortium; we help public services save money
  young people in England
                                                                                                                     We start to                         Fernstone in
                                        Greater Manchester                     Essex Care                            support families                    Hexham
                                        Team launched                          Team launched                         in Cumbria                          officially opens

                                         2004                                    2001                                 1998                                1996
                       2006                                  2003                                   2000                                1996
   2006                Founder                          The government's                           Rainbow Trust                        We start to
                       Bernadette Cleary                programme for children                     joins the digital age                support families
                       awarded OBE                      and children's services                                                         in the North East
                                                        Every Child Matters is

                                                                                                   First care team     Rainbow Trust Patron,
                                                   We employed our first                           set up in           George Michael, pledges
                                                   dedicated fundraiser                            Southampton         half of all royalties from

                                                       1987                                         1990
                                                                                                                       hit single Don’t Let the
                                                                                                                       Sun Go Down on Me to us
                                  1986                       £
                                                                             1990                                            1991                           1996
                           Rainbow Trust Children’s                       Alan Titchmarsh OBE
                           Charity registered by                          opens Rainbow House
                           Bernadette Cleary
         YES! I would like to help life-threatened children and their families today                                                                    Registered Charity No.10
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