This is my story. But it is also my family’s story. At nearly 21 I don’t remember its beginning. I have survived it. My parents lived, and suffered, through it ~ every moment.
So this year, just before my 21st birthday I have set myself two challenges:
- To train for, run and complete the London Marathon
- To raise a crazy amount of money for the Evelina Children’s Hospital (Guy’s and St Thomas’ Trust)
So I need your help. Lots of it. To keep me going and motivated while training in the cold of Scotland, on the beaches of the North Sea, over the next few months and to dig deep and generously contribute to my fundraising.
So why? Why this crazy thing?
The short answer?
Because I can.
The longer answer?
Because I can - thanks to the tireless work of doctors, nurses, occupational therapists, and specialists at the Evelina for over sixteen years of my life. And St Thomas now looks after me as I have moved to their care as an adult.
The longest answer?
Most of you know.
I was born healthy and well and the first six weeks, according to my parents, were great. They got to know me, my sister, Paige adjusted to a new human in her life and I was a good baby!
Then, just before Christmas, it all went wrong. At six weeks, having got bronchiolitis, I was admitted to Frimley Park Hospital. A serious but treatable winter illness, the doctors were not too concerned at first. That soon changed when I didn’t respond to treatment and I got progressively worse.
My parents were then told I had to be moved into paediatric intensive care until they could figure out what was wrong. They were told to prepare for the worst.
Later that night, a specialist ambulance was sent from London to “retrieve” me. It so happens that the doctor in charge was a cardiologist and that is the first my parents were told of a “hole in the heart”. This came as a huge shock.
The baby picture you can see is as they were preparing to move me Guy’s. My dad said he only took it because he wasn’t sure he was going to see me again …
Anyway, while at Guy’s the hole in the heart was added to by a deviated aorta and a hole in the aorta (for you medical bods out there a VSD, a PDA, and a coarctation).
I remained in intensive care while they worked out a plan on best to treat me as I was too unwell for surgery.
Discharged on the 23rd of December my first Christmas was an anxious time for everyone.
I had 59 nights in hospital in my first six months when I was too unwell to be home. Monthly visits to London for reviews.
During this period the Evelina Children’s Hospital was built and I was one of the first to have surgery under their care. At age five, I had a coil fitted to close the hole in my aorta. It worked. Funny aside, it occasionally sets off airport scanners! I now have a copy of my medical discharge on my phone as evidence of this for security officers confused as to why I ping!
At age six I had my second heart surgery to fix the coarctation. Unfortunately, that didn’t work and it remains under review today.
So what did this mean to me as a child?
Well, I was lousy at sport. Being on steroids and all kinds of medication on top of everything meant I had little stamina, got breathless quickly etc. in fact, I wasn’t even allowed to go on long-haul flights, ski at altitude, or scuba dive (which annoyed me when Paige did it!) because of the risk. I was always the last one in school races and only properly learned to ride my bike when I was 11. A huge milestone at the time!
I was very lucky to have gone to a prep school that actively encouraged me to take part in everything even when I was just NOT good! I swam, played rugby, football, and cricket (I got good at scoring!). But I also found my strengths academically, in theatre and managed to work my competitive edge at chess.
As I got older, the monitoring continued. ECHO Scans, exercise tests, MRIs became part of my six monthly to yearly checkups. Every time we didn’t know if the decision to operate again would be made.
I still wait. My next review is in May this year.
At 16, I was moved from the Evelina to the St Thomas Adult congenital heart unit. A new unit was created to look after those babies like me who are now young adults (the reality being that this is a newish discipline as so many of us did not make it 20 years ago).
It is thanks to the care I have received that made it a possibility that I have learned to love running.
And inspired by the beaches of St Andrews (where Chariots of Fire was filmed) I found the confidence to run my first 10k for Paige’s charity last year.
This year, I am going further in every way and pushing myself to my very limits. My first marathon. London in April. To say I am anxious is an understatement. To say it is a huge challenge even more so. But doing it for Guys and St Thomas will give me the motivation I need.
So please, dig deep and help me reach my fundraising target.
Help me help all the Xavier’s behind me.
Thank you for reading this and thank you for your support.
It means everything.