Thanks for taking the time to visit Harry's JustGiving page.  Our wonderful boy passed away on 22nd September 2010. He had a condition called Niemann Pick Type C - a neurodegenerative condition.  Harry was born on 7th September 2003 and shortly after his birth was transferred to the LGI as his heart and lungs weren't funtioning properly. Amazingly he made a great recovery within 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 normally albeit with an enlarged liver which caused concern to Dr McLean at St James Liver Unit. Still he looked healthy so we didn't worry! Twin sisters 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.  Amazing Harry!! Shortly before his 4th birthday we had a liver biopsy which produced the devastating news that he had Niemann Pick Type C, a genetic inherited faulty gene, we were told to expect the worst.  Our gorgeous boy may not reach adulthood. Harry's condition progressed rapidly.  He started school walking, 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. Harry's sister, Grace also has Niemann Pick Type C and Martin House are a lifeline to families like ours. So many wonderful families pass through their door.  Please take time to reflect on your wonderful families, and support Martin House and the wonderful people who love and support families like us.  Thank you.

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