This is the story of Oscar, a little boy who is having a very BIG life. Oscar was born in 2002 at Guys Hospital with a combination of complicated cardiac defects. Individually, these problems were managable and possibly fixable, but together meant a cure was not possible. Whilst everyone involved with Oscar's care was hopeful, it was with uncertainty that his journey began. Immediately after his birth, intervention was necessary and at the ripe old age of 8hrs, Oscar underwent his first proceedure. The next 3 weeks were spent in NICU, PICU, SCBU and the operating theatre with Oscar needing surgery again at 16 days. During this time, we were not able to pick him up and hold him close, which was difficult for the whole family. We worried that he wouldn't know we were there, fighting along side and for him every step of the way. After what seemed like forever, we were finally able to take Oscar home. The following months and years were very difficult. We were first time parents of a baby that needed so much more than love. Our extended family and solid group of friends were fantastic, but we were all out of our depth.
At age 3, Oscar underwent his 3rd operation, a major open heart surgery taking nearly 8hrs. While his initial recovery was amazing, sadly it was shortlived. Within a few days he was on life support with a very guarded prognosis. The next week went by in a horrific blur. The entire cardiac team were relentless in their efforts to bring our little boy back to us and for that we are truely, eternally grateful. After a barrage of tests, proceedures and another 6hr stint in theatre, Oscar turned a corner. But it was a very bumpy track, with many setbacks. Eventually, we were again home, but still with a blurry future. Oscar will need more surgery, probably continuing into adulthood.
And here we are 5 years down a smoother path than we could have hoped for. The physical success of Oscar is due to the dedication and expertise of the surgical team, consultants, nurses, outreach team and staff in other departments of Guys and The Evelina. But it's Echo who have kept us sane and united during our bid for Oscar's wellbeing. It's not really possible to see how we would have coped without Echo. Even our very first proper outing with baby Oscar was on an Echo activity. We felt more confident amoungst other families in the same situation.
Echo have guided us and many other families through the maze of child heart disease. As well as a constant presence on the ward, offering emotional and practical help, they maintain contact once families are back home to provide support whenever it's needed. The children themselves also gain a great deal. Oscar has made many friends, attends Echo activites and is learning that the helped make great helpers. As he matures, they'll help him understand his situation, identify his limitations and find ways around them.
We will always need Echo, but now, with your help, we have the opportunity to ensure they can continue to provide the high level of support that we've received, to as many "heart" families as need it.
Nigel, Kieran and Sue are all prepared to brave the height of Guy's Tower(450ft, yikes!!!) to raise money for this great charity. If you could donate any amount, we would be very grateful.
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