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harry xHARRY’S STORY

Harry was born on 7th September 2003 and shortly after his birth was transferred to the LGI as his heart and lungs weren't functioning properly.  Amazingly he made a great recovery, within just a few weeks, and we were told that he had a leaky valve that would be repaired in his late teens.

 

Devastating news, but hey, it could be fixed! He continued to thrive and develop really well, albeit with an enlarged liver which caused concern to Dr McLean at St James Liver Unit.  Still he was a very healthy toddler so we didn't worry! Twin sisters Grace and Emily were born and he adored them.  Then we received news that he had a congenital hip deformaty.  He had surgery at the age of 2, was in a full body cast for 6 long, long weeks (such a brave boy) and had to learn to walk all over again, but again, fantastic surgeons had fixed the problem.  Our amazing Harry!!  Shortly before his 4th birthday he had a liver biopsy which produced the devastating news that he had Niemann Pick Type C, a genetic inherited faulty gene, and we were told to expect the worst.  Our gorgeous boy may not reach adulthood. 

 

Harry's condition progressed rapidly.  He started school at the age of 5 walking, but by Christmas he couldn't walk, in the summer we had a family holiday, he had his first seizure and I heard him speak Mummy for the last time.  My brave boy managed to smile and make everyone happy for another year before his little body could take no more.  The day before he died, he enjoyed a lovely day with his school friends at St Josephs and was made star of the day!  He is constantly talked about and is remembered with love by all who knew him (Harry made friends wherever he went). Without the love and support of Martin House I don't know how we would have coped. They helped us through those difficult days. They have been with us throughout our journey and continue to provide love and support.

 

Our wonderful boy passed away on 22nd September 2010.