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Kam's Heart <3
£3 Raised
0% of £15k goal
1 contributor
3 Years running

Kam, the sweetest, funniest kid I know, arrived into the world in June 2005. He made a dramatic entrance 8 weeks prematurely, weighing in at a teeny tiny 3lb 4oz. Within hours of his arrival he had been whisked away to theatre to "fix" a problem with his heart. The surgery was a success, but it did not "fix" his broken heart. Most, if not all, parents and families of a child with Congenital Heart Defects (CHD), soon come to realise that a broken heart can never truly be "fixed" and this is certainly true for us and Kam. By the spring of 2006, Kam had undergone 4 open heart surgeries and had been diagnosed with Hypoplastic left heart syndrome (HLHS) ( By Autumn the following year, we also had a diagnosis of Arrhythmogenic right ventricular dysplasia (ARVD) ( This is considered to be a working diagnosis as other, as yet still undiagnosed, factors are also at play. 

Kam, now aged 8, is still with us and is a joy to know. Despite facing major obsticles along the way, he is a cheerful, bubbly, polite and very bright little man. Kam has, to date, spent almost 3 and a half years of his life in hospital. It hasn't been easy for him or the family but he rarely complains. 

As I said earlier, it isn't possible to "fix" a broken heart and over the years we've come to understand that Kam will never be cured. Due to the ARVD, his heart is now damaged beyond repair and he'll require a heart and probably lung transplant. Due to the HLHS and the "other" factors, this isn't a simple matter as there is major reconstructive surgery required before a healthy heart will "fit". 

Earlier this year, Kam was fortunate enough to travel to California to meet with specialists who belived they could help with the reconstruction process. Although it is possible to do this in the UK, it is thought that it would take many years to complete. Time which we may not have. Whilst in America, countless scans, blood tests and other tests (lung function etc) were carried out. Long story short, the results of these tests were passed to a Heart centre in Boston and it is hoped Kam will travel in 2015 to Boston to undergo surgery to prepare the way for a transplant. 

Most of you are probably reasonably familiar with Kam's battles from updates in person or on Facebook and know that this isn't a very "us" thing to do. At least, I hope you know that. It isn't something we have decided to do lightly but over the past month alone it is evident how much Kam is deteriorating and the reality is dawning on us that Boston is our only realistic hope of preparing Kam for transplant. Unfortunatly, medical care in America does not come cheap and whilst we are raising as much as we can towards the surgery ourselves, the additional costs (travel, accomodation, food, transport to and from hospital appointments before we travel and once there etc) are spiralling and it is becoming less and less likely we will have the funds in time. 

Hopefully you also know us well enough to know that we never ask for something for nothing, so to anyone donating £5(+), please let us know you have and send us your address so Kam can send you a little beaded thank you. 

Thank you so much from the bottom of our hearts <3

Jen (Aunty Jen) xx 

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