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yLife
Issue 22/Summer 2020
Our impact in 2019 12
Brexit advice 16
The magazine for people affected by
cardiomyopathy and myocarditis Legacy of love 20
‘I was petrified I wouldn’t
see my daughter grow up’
Page 18
the heart muscle charity
| 2| 2
Contact us
If you would like more
information on our services,
Welcome
W
please get in touch elcome to this edition
of My Life.
Call or write to us Despite the challenges for
many of you trying to cope
with heart disease, common
Unit 10, Chiltern Court, illnesses and the threat of a
Asheridge Road, coronavirus epidemic, work at
Chesham, Bucks HP5 2PX
Cardiomyopathy UK continues
01494 791224 at speed.
I hope by the time you read
Helpline this, it will have stopped raining too!
This issue features highlights from our 2019 Impact
0800 018 1024
Report and some of the things we achieved last year.
(free from a UK landline)
8.30am-4.30pm, Monday-Friday Our board of trustees (turn to Page 12 to meet our
latest members) decides the charity’s strategy, but
we are delighted with the impact our volunteers –
Find us online supported by our staff – make to those affected by
cardiomyopathy and myocarditis.
www.cardiomyopathy.org
For some, their place is supporting other patients in
face-to-face, telephone, or Facebook conversations.
contact@cardiomyopathy.org For others, their role is focused on raising awareness
or fundraising.
Live chat On Page 14, read about how we are creating a new
role for volunteers, by building a national network
www.cardiomyopathy.org of patient/supporter representatives, who can work
8.30am-4.30pm, Monday-Friday
alongside us to influence health policy and local
delivery.
Social media Our aim is to support clinicians in providing the type
of services that we need, such as one-stop specialist
/cardiomyopathyuk clinics.
While some services need more resources, much
@cardiomyopathy
can be done by developing people in different
@cardiomyopathyuk ways and sharing best practice.
Keep well,
Cardiomyopathy UK is a charitable
incorporated organisation (CIO) with a
registered charity no 1164263 Alison Fielding, Chair
This magazine and its plastic wrapper
is 100% recyclable Front page photo: Holly Aldridge and daughter Megan
3|
Contents
4. Restrictive cardiomyopathy 12. How we make a difference
6. Charley’s RCM story 16. Post-Brexit advice
10. Readers’ questions 18. Peripartum cardiomyopathy
| MyLife
|4
Guide to restrictive
cardiomyopathy
W hat is restrictive
cardiomyopath (RCM)?
the following:
• shortness of breath;
Restrictive cardiomyopathy is a • fatigue;
rare form of cardiomyopathy in
which the heart’s ventricles (the • swelling in the abdomen and
lower chambers) become stiff ankles;
and lack the flexibility to expand • weight gain;
as they are filled with blood.
• loss of appetite;
This poor filling function means
that the ventricles receive less • palpitations;
blood than normal, and so • nausea and
blood flow around the body
and the heart is reduced. • fainting.
Also, blood gets ‘backed up’
as it cannot enter the heart as
normal, which causes a build-
W hat causes RCM?
Although the cause of
RCM is often unknown, it can
up of pressure. This can cause
be genetic and run in families. It
the atria (top chambers of the
can also develop owing to other
heart) to enlarge.
conditions, such as:
W hat are the symptoms
of RCM?
• scar tissue in the heart;
• amyloidosis – a condition
Some people have no symptoms where there is too much of
of RCM, or very mild symptoms. an abnormal protein (called
But over time, the restricted amyloid) in the body, and it
function of the heart can lead builds up in the heart muscle;
to heart failure (where the heart • haemochromatosis – a
fails to pump enough blood, at condition where too much iron
the right pressure, to meet the from the diet is absorbed and it
body’s needs). builds up in the organs, including
This can cause symptoms that the heart, and
develop as the heart’s function • following some treatments for
reduces. Symptoms can include cancer, such as radiation therapy.
Medical |
5|
› Heart with restrictive
cardiomyopathy
where the ventricle
walls stiffen and lose
flexibility
› A normal heart
W ho gets RCM?
RCM is relatively rare
muscle) is done to determine
the cause of RCM.
compared to other types of
cardiomyopathy. W hat is the treatment?
Although RCM cannot
be cured, treatment aims to
It is most often diagnosed in
children (rather than adults) reduce and control symptoms.
at five to six years of age, Some treatments may not be
although it can develop at any suitable, depending on the
age. underlying cause of the RCM.
H ow is RCM diagnosed?
As symptoms can be
Doctors many recommend
lifestyle changes, which might
subtle to start with, diagnosis include a healthy diet and
may be difficult. exercise.
A diagnosis is based on They may also discuss using
medical history, a physical medications to treat heart
exam and tests such as an failure, including beta-blockers
electrocardiograph (ECG) and and ACE inhibitors.
an echocardiogram (ECHO). In severe cases, people with
Occasionally, a myocardial RCM may require a heart
biopsy (biopsy of the heart transplant.
| MyLife
|6
Charley’s
story
Charley is a
member of our C harley Maunder, 22, has
never known what it’s
like living without a heart
heart transplant.
However, the supermarket
CYP&YA Panel that worker from Poole, Dorset
condition. says she felt “completely
meets regularly
Born with a heart defect, she normal” as a child.
to discuss how to
improve services had closed-heart surgery at “I wasn’t aware of any difference
six days’ old and open-heart as my parents tried very hard
for young people
surgery at four months. to treat me exactly the same
affected by
And since being diagnosed with as my brother and sister,” she
cardiomyopathy
restrictive cardiomyopathy says.
and myocarditis.
(RCM) aged 11, she has been “But growing older, as my RCM
assessed three times for a got progressively worse and I got
Case Study |
7|
more symptoms, I started to about the condition, I’m living
notice how different I was and a much more full life and
throughout the years, it has there is so much support from
affected every area of my life,” Cardiomyopathy UK for people
she admits. and carers in exactly the same
position as me.”
“As a schoolgirl, I had to stop
trampolining and gymnastics. Charley is currently managing
Later, I had to give up training her condition with medication,
to be a beautician because it despite knowing her RCM will
was too physically demanding.” continue to deteriorate and
she’ll need a heart transplant.
Today, Charley says her RCM
affects 50 per cent of her “I was on the transplant list
lifestyle. from 2017 to 2018, but then I
was taken off and I felt a huge
“I’ve worked hard to find a
sense of freedom.
good work/life balance so my
days feel full, but I don’t feel ill “Although I don’t know what
by the end of the day. the future holds, it’s hard
knowing I will probably need a
“This has been particularly hard
transplant at some stage.
because I’m unable to work
full time or pursue my dream “But I’m putting it to the back
of a career in health care as it of my mind while I try to
would be too strenuous,” she get physically and mentally
adds. stronger,” she insists.
“I worked in a lovely cafe as a The good news is that Charley
waitress, but again, this got too is now well enough to go
much and I had to give it up. on her first solo holiday to
Thailand in October.
“But then I found a sympathetic
employer at a supermarket “My condition has always been
with a strong disability policy noticeable when I go away
where I work part-time doing because I can’t keep up with
short shifts. I also volunteer in my family or friends and we
a charity shop twice a week, have to make adjustments, or I
which gives me a routine.” don’t join in with what they’re
doing.
Although there have been
many difficult times, Charley “My brother and sister have
is grateful to Cardiomyopathy both had the chance to travel,
UK for helping her understand so I was so excited when I
more about RCM and giving her booked my first two-week
a voice to speak out and raise trip on my own. I’m looking
awareness. forward to seeing the world
and being just like any other
“As I get older and learn more tourist!”
| MyLife
|8
Get cooking and support Cardiomyopathy UK with our
2020 foodie
fundraiser
› Chocolate cake with
raspberries. This cake
recipe is also available
with vegan-friendly
ingredients
› Lemon and poppy
seed drizzle cake.
This cake has been
made with 20% less
sugar and spelt flour
O ur gourmet chef Ian and are even more enjoyable
Human has created when surrounded by friends and
a delicious 2020 foodie family.
fundraiser to help families Ian has created two recipes for
affected by cardiomyopathy. you to try – a chocolate cake
with raspberries and a lemon
Fundraising events are so much cake, made with alternative
fun to organise and take part in, ingredients to reduce sugar and
Services |
9|
dairy content. Ian has worked between, the event is all about
hard on changing the having fun and raising money
ingredients to create cakes we and awareness.
guarantee your guests will love!
To request your foodie
Organising your coffee and fundraiser recipe cards and
heart-shaped cake event fundraising pack, go to https://
couldn’t be simpler. www.cardiomyopathy.org/
fundraise-for-us/fundraise-
Whether you host it in the
for-us
comfort of your living room
with a few friends, organise it Or contact our community
as a large social event with your fundraiser Jaye at jaye.
support group, or anything in chassebi@cardiomyopathy.org
Charity raffle is back with a bang
You can also visit our online
shop to buy tickets at https://
www.cardiomyopathy.org/shop/
shop/product/raffle-ticket--
single
Our goal this year is to sell
O ur annual Summer Raffle
is back for 2020 with
more amazing cash prizes to
5,500 raffle tickets.
The closing date is August 31
and only tickets purchased
win. online and received in the post
With tickets on sale for just £1 by the end of the day on August
each and prizes worth £500, 31, will be counted. The draw
£250 and £100, why not try will take place on September 1.
your luck and enter?
Each £1 ticket helps support our
Use the raffle ticket booklet vital work and enables us to be
inside this My Life to buy tickets there for families who need us.
for yourself and sell to your
family and friends, then simply To find out more information,
send the booklets back to us. contact our community
(Please recycle any unused fundraiser Jaye on jaye.
tickets). chassebi@cardiomyopathy.org
| MyLife
| 10
Q&A
with t
he Services
Team
If you have a question for our
experts to answer, please email
contact@cardiomyopathy.org
Q: Why am I feeling so channel blockers – which
fatigued? work by reducing the
› Ali Thompson
workload or slowing down
Support nurse Jayne your heart.
Partridge says: “Fatigue is
feeling unusually tired and “Some diuretics, such as
weak. furosemide, can make you
feel fatigued by eliminating
“It isn’t the same as feeling some electrolytes.
drowsy or sleepy and can’t
be remedied by sleep or “These effects may wear off
taking a rest. once your body adjusts to
› Jayne Partridge the new medication or dose
“Being sleepy may be a increase. However, if you are
symptom of fatigue, but it’s concerned, see your GP or
not the same thing. cardiologist.”
“When you are fatigued,
Q: What are some
you have no motivation or
developmental concerns
energy. Fatigue can be owing
to health conditions such
associated with having
as cardiomyopathy and can cardiomyopathy as a child?
› Emma Greenslade also be as a result of stress, Support nurse Emma
bereavement or anxiety. Greenslade says: “The
“It can be caused by your way a child deals with
muscles not getting enough stress depends on age
oxygen and can also be and developmental level,
caused by insufficient sleep. temperament, and family
situation.
“Some medications can
cause fatigue – beta “Information provided to
› Caryl Evans blockers, ACEs (angiotensin- children should be tailored
converting-enzyme to their maturity level, health
inhibitors) and calcium literacy, needs, and readiness
Services11 | to understand their cardiac cardiogram last week at condition. my routine cardiologist “Children often exhibit an appointment that said my increased readiness to learn at EF was 40%. I then received key points in development, so a letter a few days after watch for teachable moments from another doctor, stating and provide education and systolic function from the counselling at your child’s MRI showed the EF is 30% maturity level. with systolic function still “Encourage them to take an severely impaired. Why the active role in managing their difference? cardiomyopathy. Talking about Support nurse Caryl Evans it by participating in taking says: “MRI is gold standard medication and interacting imaging for cardiomyopathy with their paediatric for assessing and evaluating cardiologist at appointments the quantity of the heart’s can help. function including volume, “Anxiety is the most common and of course, ejection psychological symptom fraction (EF). experienced by children “Echocardiography is the with cardiomyopathies, most widely used imaging and therefore, they may in practice as it is more experience a greater need for widely available and less time affirmation from friends and consuming. However, any family and counselling if the technician or cardiologist family feel they are not able to carrying out a transthoracic cope. echocardiogram (Echo) “Signs that a child is having follows set standards and difficulties adjusting to living protocol when evaluating with a medical condition and estimating the size and include constant feelings of function of the heart. being sick ie: tummy pains “Each professional has a (leading to school absences), slightly different way, but social isolation, or avoidance in essence, this margin of behaviours. difference is very small. “Always seek help and don’t “Clinical research into this has try to deal with the worries shown cardiac MRI is more yourself. Other family sensitive in distinguishing wall members can help, as well motion abnormalities and as paediatric counselling essentially a more accurate therapy.” evaluation. Q: I had a cardiac MRI “If there is a discrepancy, you scan three weeks ago, should go with the results of and a transthoracic echo- the MRI.” | MyLife
| 12
Our impact in 2019
we support has increased
2 019 was another great
year for the charity and
I’m especially pleased that
greatly since our early days,
we still remain rooted in the
community that we support
we were able to reach out and have kept true to our core
to more people and make a belief that everyone affected
deeper and longer-lasting by cardiomyopathy should lead
impact on their lives. long and fulfilling lives.
In our 30th anniversary year, it Take a look (facing page) at a
By Joel Rose
Chief Executive of was amazing to think how far few of our service highlights
Cardiomyopathy UK we had grown and I’m proud included in our 2019 Impact
that while the range of our Report, which will be available
work and the number of people soon.
We’re delighted to introduce three new volunteer members onto our board of
trustees, which has overall responsibility for the work of Cardiomyopathy UK
Tootie Bueser is the lead cardiac Elis Power, 26, was diagnosed with Alyson Smith reached out to the
genetic nurse for Inherited Cardiac Hypertrophic Cardiomyopathy, charity more than 25 years ago
Conditions (ICC) services at King’s four years ago. HCM was found to source information on HCM as
College Hospital and Guy’s and St to be in his family after his her husband had been recently
Thomas’ Hospital. She is currently father passed away suddenly. diagnosed. The telephone support
completing a PhD on improving the Elis is a founding member of the and screening information was
care of patients with ICCs and will charity’s 14-25 Young People’s invaluable to the family. In 2019, the
soon join St Bartholomew’s Hospital Panel and also runs the Bridgend gene was identified in the family,
as the Associate Director for Clinical Cardiomyopathy Support Group with one of her grown-up children
Research, where she hopes to with his mother and fiancée. Elis identified as a carrier. With a career
continue her research focusing on says he hopes by working with in corporate social responsibility
ICC patients and their families. Tootie the board of trustees, he can and 18 years’ experience as a
is a member of the Clinical Expert continue working towards his goal fundraising manager, Alyson says
Advisory Group for Cardiomyopathy of supporting those who struggle she is passionate to see the charity
UK and also volunteers for the patient with their diagnosis at a younger grow and increase awareness in the
support line. age. community.
News |13 |
› We welcomed an › Clinicians told us that attending our clinical
unprecedented 235 education event had...
attendees to our
2019 conference in
London with the aim
— as always with our
conferences — for
people to leave more
knowledgeable, more
confident, and a little
more hopeful for the
future...
› We are delighted with the
impact our Helpline made
last year to people with the
following conditions...
› People who attended our support groups
told us it helped them...
› The charity worked hard to ensure anyone
entitled to welfare benefits was given the
help they needed...
| MyLife| 14
‘Local volunteers
will be crucial’
Charity launches new Advocacy Project
›The ideal
treatment Quick Genetics Long-term
Specialist
pathway, which
diagnosis & family care &
is experienced treatment
by only nine per testing support
cent of people
we surveyed
of people with cardiomyopathy are
receiving the ideal care and treatment
I n 2019, the charity
undertook its own
research project looking at
about their family; or offered
genetic testing. The charity
has been working to address
the experience of people this issue through our clinical
with cardiomyopathy in education programme and our
work with other charities and
being diagnosed, treated
organisations within the heart
and accessing screening failure community.
and genetic testing.
This has had some impact, but
Our work showed that only clearly there is much more that
a small proportion of people needs to be done.
received the ideal care and This year, we will be launching
treatment and highlighted a new project aimed at
real problems with securing identifying and addressing
a diagnosis and receiving problems in the care and
specialist care and long-term treatment pathway.
support.
The project will bring together
It was especially worrying to volunteers, who are service
see that far too many people users and clinicians, to form
are not being told about the local teams that identify the
potentially genetic nature improvements that can be
of cardiomyopathy; asked made in their area and create a
News15 |
“local action plan.” Each Local volunteers who are service
plan will be based on an users are crucial to this project.
understanding of local
This is because the organisations
shortcomings against best
that commission and deliver
practice and NICE guidelines
local service are required to
and map out specific goals,
have patient representation
timescales and the actions to be
and are expected to respond to
undertaken, to improve care and
patient input.
treatment.
So a focused attempted to
While it is important that we
highlight deficiencies in a
make our voice heard and are
regional by service users is
clear about what needs to be
likely to have a positive impact
improved, we do see our role
especially where this can be
as a source of support; bring
supported by local healthcare
people together and facilitating
professionals and the charity.
change.
Later this year, we will
By working in this way and on
be starting the volunteer
a local basis, we believe that
recruitment and training process
we can make the best use of
so please look out for more
our volunteers and clinical
information.
networks and have a better
chance of making changes While this project gets
that will impact positively on underway, we will continue
people’s lives. our work on a national level
This is an ambitious project alongside other charities,
and we will need a team of medical associations and
well-trained and dedicated stakeholders in the heart failure
volunteers to work in their local community, making the case for
areas in order to help us shape better support and treatment for
our strategy across the UK. people with cardiomyopathy.
New to the team
A big welcome to two new staff
members – community fundraiser
Jaye Chassebi and Karen Gregory,
challenge events fundraiser
(maternity cover).
With so many ways to raise funds
– from bake sales, to abseils and
skydives – Jaye and Karen have done
all sorts of events and can help you
with ideas for yours, so please give
› Jaye Chassebi them a call on 01494 791224. › Karen Gregory
| MyLife| 16
What you
need to know
post-Brexit
W e take a look at the
implications for
travel and healthcare
insurance that covers your
specific needs, including
medical conditions.
within the European You can also speak to your
Union (EU), which may be travel insurer about any
a worry for some people specific cover for the post-
with cardiomyopathy. Brexit period.
A link to travel insurance
information can be found
By Jayne Partridge Advice for Travellers on our website https://
Cardiomyopathy UK
Both the UK Government and www.cardiomyopathy.org/
Support Nurse
the EU say UK citizens will still insurance/travel-insurance
be able to travel to and from
FIND OUT MORE the EU following Brexit.
If you would like further
Passports
Despite the UK leaving the
information, please
EU on January 31, everything Newly-issued British passports
contact the support
nurses on our Helpline will remain the same. This will be blue and gold and lose
0800 019 1024 or is because there is now a all references to the European
via supportnurse@ Union, but existing passports
cardiomyopathy.org
transition period until the
end of 2020, while the UK can still be used to travel to
and EU negotiate additional and within the EU, until they
arrangements. expire.
Flights will continue as normal You do not need to have six
between the UK and EU, as will months left on your passport
ferries and cruise ships, which to travel to the EU.
operate under international The UK Government has
rules rather than EU rules. published an online tool to
A travel visa won’t be required help you check the validity
to travel to the EU, as long as of your passport at https://
travel is up to 90 days within a www.passport.service.gov.uk/
180-day period. check-a-passport.
It is important that whenever Remember that your passport
and wherever you travel, that must be valid for for the whole
you have adequate travel of your trip.
News |17 |
European Health Insurance
Card and travel Insurance
The European Health
Insurance Card (EHIC) allows
any EU citizen to access
state medical care when they
are travelling in another EU
country.
Therefore, UK registered EHIC
will remain valid post Brexit
and during the transition
period.
ABTA advises holidaymakers Driving Licences
and business travellers to As long as you have a full
also make sure that they have UK driving licence, you don’t
appropriate travel insurance, currently need an additional
whether they have an EHIC licence to drive in the EU.
card or not, as there are
Depending on your destination
limitations to EHIC.
and the length of your stay,
When travelling to the EU, UK licence holders looking to
it is important you take out drive in the EU will not need an
travel insurance and check international driving permit.
that it covers your current
If required, driving permits are
circumstances.
available from the post office
at a cost of £5.50.
The new rules for Green Cards for car insurance
living, working, won’t be required as although
travelling and the UK has left the EU, the
doing business withdrawal agreement is in
in the UK and place.
EU will start
from January
1, 2021. Go to Data roaming
https://www. Under EU rules, the cost of
gov.uk/ for more making calls sending messages
information. or using the internet on your
phone in the EU is the same as
in the UK.
If you have an annual policy,
make sure that you check For a complete breakdown of
the terms and conditions roaming charges, we advise
and contact your insurance checking with you network
provider if you are not sure. provider before you travel.
| MyLife| 18
‘I couldn’t believe
I had heart failure’
N ine weeks after giving
birth, Holly Aldridge, then
33, started to get palpitations
one night, the couple realised
Holly was so ill they needed to
call an ambulance.
that “would stop me in my Holly was taken to Nevill
tracks and I’d need to sit Hospital in Abergavenny
down afterwards.” and after hours of tests, she
Holly, from Powys, Wales, had was told she had peripartum
always been fit and healthy, cardiomyopathy (PPCM)– news
with no history of heart that changed her world.
problems in her family. “When the doctors said I had
The hospital administrator heart failure, I couldn’t believe
had a normal, uncomplicated it,” she admits. “Then, when
pregnancy and a straightforward it sunk in, I felt numb and
birth. However, she felt petrified that I wouldn’t live to
constantly exhausted after her see my daughter grow up.”
daughter Megan was born on Holly was transferred to the
October 29, 2012. University Hospital Wales, where
“I was overjoyed with relief and a week after her admission,
› Above: Holly and Megan,
who is ‘especially precious‘ happiness, but also felt utterly she she reacted badly to her
as Holly has been advised exhausted,” she recalls. medication and crashed.
not to have any more
children Semi-conscious, Holly only
“I discounted this as the ‘normal’
remembers being surrounded
feeling of a new parent and
by doctors working on her and
assumed my palpitations
when she quizzed her heart
were owing to the stress of
failure nurse in clinic a couple
parenthood, but I began to
of years later, she confirmed
struggle with my breathing and
that they had expected Holly to
had to prop myself up with
die at that point.
pillows at night.”
She was then transferred to
Before long, Holly had to the Queen Elizabeth Hospital
muster every ounce of energy in Birmingham, which is the
to breastfeed her baby and transplant centre for Wales,
husband Mike even had to hold and initiated on a heart
Megan so Holly could feed her. transplant assessment.
Things came to a head when “Through it all, my will to fight
Case Study |19 |
and refusal to accept defeat fitter and stronger and more Peripartum
never left me,” she insists. able,” she says. cardiomyopathy
(PPCM) is a rare
Over time, Holly began to feel By the end of the six-week
cause of heart
stronger and her body began to programme, Holly says she felt
failure with onset
accept the drugs. And despite like “a new person”.
usually in the
her appalling medical profile,
She was no longer too scared first month after
she baffled technicians by
to try and do anything more delivery, but
passing the final tests of her
than a quick walk, but also may occur in the
transplant assessment and was
mindful that on tired days, she last month of
sent home “with a huge bag of
needed to go easy on herself. pregnancy and
pills”.
“Today, I’m living a virtually up to five months
A week after her discharge,
normal lifestyle,” she says. after giving birth.
Holly was determined to get
back her independence and “I work five days a week and
In PPCM ,the
learnt how to pace herself. attend the same fitness class
that I did before I got pregnant. woman’s heart
Although her heart function becomes enlarged
improved, she was fitted with “I have even walked up Pen- and its pumping
an ICD and gradually, began to y-Fan – what an achievement action weakened
get stronger. and something I thought would and less able to
never be possible! pump blood than
“I had regular check-ups with
the heart failure nurses, who “But thanks to my physiotherapist normal.
very slowly and carefully believing in me and all of the
titrated up my medicine, aiming NHS staff involved in my care It can be difficult
for maximum dosage,” she and recovery, I did it.” to diagnose PPCM
explains. “I reached a massive as many of the
milestone on Megan’s first signs are similar
birthday – a day I thought I’d to symptoms that
never see.” can also happen in
In 2014, Holly was referred pregnancy, such
to her local cardiac rehab as swelling in the
programme, which she says feet and legs, and
changed her life. some shortness of
“When I started the rehab
breath.
programme, I must admit, I did
wonder how much benefit I Around 70% of
would get from it, as I was the women recover
youngest by at least 20 years! one year following
diagnosis (based
“But because of the way the
on their ejection
fitness part of the programme
fraction, rather
was devised with circuit
than their
exercises that could be tailored
symptoms).
to each individual’s own level, I
quickly found that I was getting
| MyLife| 20
Legacy
of love
David was a racing champion,
W hen David Brooks died
last year, aged 83, he
left a wonderful gift in his
until one day, his life changed
forever after he was knocked
off his bicycle in a hit-and-
will to Cardiomyopathy UK run accident.
– given in memory of his
beloved wife Kay, who had He was admitted to Stoke
the condition. Mandeville Spinal Hospital
Fundraising stories |21 |
in Bucks, where during his
rehabilitation and adjustment
to being a paraplegic, he met
Kay, who was his occupational
therapist.
They fell in love, got married
and set up home in Chesham,
Bucks.
After his Royal Air Force service
in electronics, David took a job
repairing televisions until he
obtained a job with IBM and
he remained with them for 30
years.
During that time, he rose to
become the chief executive
of his section, contributing
many good ideas and practices
that saved the company many
thousands of pounds.
David also supported a number
of charities and helped establish
a fishing club for the disabled,
taking part in many international
competitions and on one donation. If you would
memorable occasion, the
Ron told us: “‘David regarded like to discuss
House of Lords.
his accident positively as he leaving a gift
David and Kay were together always said that it had brought in your will to
for an amazing 47 happy years him to Kay. help future
until Kay sadly died in 2007 and generations,
eventually, David moved into “They were totally devoted please contact
a residential care home after to each other and David was Sheila Nardone,
suffering a stroke in 2017. always concerned for her our Head of
heart health as a result of her Fundraising, at
The charity first met David’s cardiomyopathy. Sheila.nardone@
brother Ron, when he came
“That’s why he left a gift to cardiomyopathy.
to visit our office having raised
Cardiomyopathy UK, because org
£648 at David’s funeral through
his MuchLoved tribute page. he wanted to help other people
with the condition.”
Then a few months later, he
returned with a cheque for Cardiomyopathy UK is most
£5,000 to Cardiomyopathy UK, grateful to Ron and David for
including his own generous their support.
| MyLife| 22
Walks and treks
May-December
There are a great choice of
amazing walks and treks
to choose from – from the
Brecon Beacons trek with
two distance choices; to
Ultra Walking Events (from
23km to 100km) in the Isle of
Wight, London to Brighton,
Cotswolds, South Coast or
Thames Path; to climbing
the National Three Peaks
or Yorkshire Three Peaks –
check dates on our website.
30 Day Challenge W hy not make 2020 the year when
you take on a challenge for
yourself and for Cardiomyopathy UK?
Notice your skills and confidence grow and
experience a great sense of achievement
while raising vital funds for our charity.
From skydiving to a 30 Day Challenge at
home, there really is an event for everyone.
n To take part in any of the events listed, visit our
website https://www.cardiomyopathy.org/events/
events or email fundraising@cariomyopathy.org
or call 01494 791224.
Marathon
The 30 Day Challenge is your choice
- maybe you want to give up snacking
achievements
on sweets, read a book every day, help
a neighbour, practise an instrument, or On April 26, our #teamcardio of 50 runners
start an exercise programme? ran the Virgin London Marathon 2020
(watch out for highlights in our next edition
Memory experts say it takes a minimum of My Life).
of repeating something 21 times for it to
become a new skill, so what new skills do Congratulations and huge thanks to Dougie
you want to acquire? Paton and Pete Rutherford for running the
Marathon des Sables from April 3-13 and
Simply decide on your challenge, sign up raising (at the time of going to press) an
for our free 30 Day Challenge pack via amazing $16,000.
our website, and then ask your friends,
family and colleagues to sponsor you for Thank you, Dougie and Pete. To help them
each of the days on your challenge chart. reach their target of $20,000, donations
came be made on their Just Giving page:
Whatever change you want to make, the https://www.justgiving.com/fundraising/
30 Day Challenge is for you.
petedougmds
#teamcardio23 |
Join #teamcardio
Skydive
June 27, 2020
Have the experience of a lifetime by
skydiving over the beautiful countryside
of Salisbury in June.
The skydive is an unforgettable way to
raise money and help people affected by
Cardiomyopathy.
Attached to a professional instructor,
you’ll jump from up to 10,000ft,
experiencing exhilarating freefall before
the instructor deploys the parachute
and then you drift gently to earth, taking
in the beautiful views. All the training
takes place on the day, and if you raise
£450 you jump for free!
https://www.cardiomyopathy.org/
skydive/skydive-home
To apply
for one of
Running If you’re a runner, or an
aspiring runner, there’s a
our charity events great choice of runs from
fun runs to 10k to Half
places in the Marathons.
2021 Virgin
London Sign up for a 10k in
Marathon, London, Bournemouth
please or Leeds or enter
a half-marathon in
register via
Bournemouth, Cardiff,
our website
Edinburgh, London
from May. Hackney or Royal Parks
London
Maybe there’s a fun
run near you that you
could enter and run for
Cardiomyopathy UK?
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