Page 6 - CHSF BraveHearts Winter 2018

My Journey so far Edward’s Story “Edward’s sister was only 23 months when Edward
was born and has suffered with separation anxiety
ever since, even though she is now 9. Something I
wish I had known more about was the impact that
By Mum, Emma CHD can have on siblings so I could have prepared a
By Tom Wilkinson bit better.”

“I fell asleep and missed breakfast and so was asked “Edward is now a happy, funny and
if there was anything I would like to eat, I replied, “We discovered Edward had a Ventricular Septal loving 7 year old. He is a great long
“I was born in Grimsby in 1989 and after just a few ‘a full English please!’. Much to my dismay, that’s Defect (VSD) at our 20 week scan and at birth they jumper and loves running, he does a
hours it was discovered I had a heart condition - exactly what I got…even though I was only joking!” also found Coarctation of the Aorta (CoA). He had 2k park run every Sunday morning
Pulmonary Atresia. At just seven days old, I was heart surgery at 8 days old to repair the CoA, patch and sometimes does the 5k adult
operated on at Killingbeck Hospital in Leeds with “Today, despite the odds, I am approaching my 30th the VSD and put a pulmonary artery band on.” park run!”
my parents being told after my surgery that I had birthday. Getting to this point in my life has been
just two weeks to live. immensely challenging, yet strangely easy. I believe “We didn’t see Edward until the early hours of the “He is passionate about running and takes enormous
it’s about support, mind-set and determination.” next morning. He looked very swollen and his chest pride in being able to do everything his friends can
“I’ve experienced four open heart operations. I also was still open however he looked peaceful and not do, something we originally didn’t expect.”
suffered meningitis at the age of four, and have “I couldn’t have done it without in pain. Edward did well and came out of ICU after 5
recently undergone surgery for a hernia and a stent my parents, my brother and in days. We managed to go home when he was only 3 “Edward is extremely proud of what a special boy
- I think it’s fair to say I’ve been through the mill!” recent years my wife and our two weeks old!” he is. He loves talking about his scar and has done
children Isabelle and Christian - a presentation about himself at school - his friends
“I remember my hospital stay in 1997. I remember who give me a new focus, and “Edward only remembers having lots think he is amazing!”
having the giggles on the children’s ward with three certainly keep me active!” of appointments and he struggled
other patients in the early hours of the morning. I for a long time being handled - even “For me Children’s Heart Surgery Fund has brought
can’t remember what was funny, but the nurse had “All these things no one with everyday things like getting a real sense of being part of a community, I feel
to close the ward doors we were that noisy! It was thought possible in 1989. his hair cut or feet measured. The there is always someone there to support us and it’s
great to mix with others, we just had fun. We never Of course, there are many doctors were very patient and by 4 so reassuring. We visit the ward twice a year to take
really appreciated what we were all going through.” medical professionals in years old he relaxed completely. He in toys and money which our family also contribute
Leeds to whom I owe so is a brilliant patient these days.” towards - it’s lovely to give something back!”
much. I live my life knowing I have
been extremely lucky and take nothing for granted.”
Meet the newest recruits...
“This is my way of giving

something back.” In the last year our charity has helped more babies, children and adults with congenital heart
“2009 was very different. It was the first time I disease than ever before and as CHSF grows, so does our workforce!
signed my own consent form - an experience, In the last few years,
made even harder by having to sign it on my 20th Tom has been working
birthday. It was a very emotional time, but I knew closely with doctors
I was in the hands of incredible doctors, surgeons and physiotherapists on
and anaesthetists.” a new Fontan exercise
programme - looking at
“My operation lasted over 17 hours and afterwards how different muscles
I was rushed back into theatre on three separate affect our hearts and how
occasions. I also had a lung operation shortly after it functions.
to correct a complication.” Tom says “Building knowledge for the future Georgie Abbott Fay Richardson Sara Dawson-Jones Olivia Richardson
is hugely important. Those of us with heart Corporate Partnerships Corporate Partnerships Fundraising Digital Marketing
Manager
Executive
Manager
Assistant
“Nearly 14 days after, I awoke. I was totally oblivious conditions are in the unique position of being
to what had unfolded and was told later on how able to help develop more understanding of this With Fay, I am Alongside, Georgie, My role at Children’s My role is to manage
close to the mark it had been. I am very proud, and complex organ.” responsible for I manage our Heart Surgery Fund and develop our social
immensely grateful.” managing our relationships with is to support all staff media platforms,
“I look at my past experiences as an opportunity partnerships with CHSF’s supporters in the fundraising website and digital
“That was the most challenging time in my life, to help, and make a difference - this is my way of corporate supporters. in the business team, and provide presence. I work to
however I always kept a sense of humour. While giving something back.” I’m always on the community. It’s effective customer raise awareness of the
in intensive care one evening, I demanded to be “Every time I see my doctors, or have any medical look out for new inspiring to see how service to our amazing charity and highlight
woken up at 5am - there was a Grand Prix on procedures, I make sure I shake their hand and opportunities for CHSF generous businesses fundraisers and its valuable work
to raise its profile
and I wouldn’t let a heart operation stop me from say thank you. They are doing a fantastic job, we amongst the business across our region can members of the public throughout the region.

who support our
be and we are always
watching it!” must always support and respect them.” community. looking for more! charity! I like to sing, play
music and take
On my days off I like In my part time I love When I’m not at CHSF photographs - as well
relaxing with a book going to festivals, I enjoy spending time as trying as many
Have these stories inspired you to tell your own? We’d love to hear them. We are incredibly grateful to our and looking after my travelling and trying at home with my different foods and
supporters who are willing to share their experiences with congenital heart disease. If you would like to share your 10 month old puppy! out new restaurants. husband and two dogs. cuisines as I can!
story, please email bravehearts@chsf.org.uk. And if you feel inspired to help visit chsf.org.uk/get-involved

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