David's & Tom's Great North and Great Birmingham Run page
David Hedley is raising money for Niemann-Pick UK
Participants: Tom Elliott
Story
Please take time to read this story of My god son, and something which as you can imagine is very close to my heart! No family deservers to go through this, every penny or pound will help!
Roman Nathan James was a beautiful 5 year old boy who was taken away from us too soon at the hand of Niemann-pick type C. This is very rare disease which causes array of horrendous symptoms. it is also know as childhood Alzheimer's because it presents similarly.
Roman was diagnosed at the age of two and the disease progressed very aggressively. Within 8 month's of diagnose roman lost the ability to walk, talk, sit and swallow and had a feeding tube fitted. He soon developed seizures and every day we saw the deterioration.
Niemann-pick type C is always fatal; however we were not prepared for it to take Roman so quickly. He initially given prognosis of 10-15 years, but soon become apparent that this was not going to be the case. Roman thought time after time illness after illness operation after operation. He was a true warrior right till the end. In march this year Roman developed aspirative pneumonia and was hospitalized, after many attempted procedures and with no improvement. My best friends had to say enough was enough, and decided to take him home. He held on and saw his 5th birthday and kept his promise and was there to be best man on his Mummy and Daddy's weeding.
On the 11th April, Roman finally gave in and took his last breath surrounded by his family. The world will never be the same and touched so many peoples hearts. He was a irreplaceable little boy and his smile and presence will live on forever.
He came, he saw, he conquered and he will never be forgotten!
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