Harry R's quilt    (Quilt Closed)

Child Interests

Swimming
Marvel
Orangutans and monkeys
Gaming
Going to Chessington
Rats he has 2 rats called Teddy and Marshmallow
Manchester City
Glasgow Rangers
Harry likes blue and orange

Biography

Harry was born in January 2014. After a complex pregnancy we were so happy to have him with us seemingly happy and healthy. As Harry developed we noticed a few things were not as we would have expected them to be. Most notably, Harry had a speech delay and would dribble uncontrollably even at age 5 he would come home from school soaked. Despite having speech therapy we were told that he was just slow and it was nothing to worry about.

When Harry started school he was referred to CAMHs as the school were worried he had autism. At the final clinic for diagnosis we raised concerns about Harry's speech but also the fact that he struggled on stairs and often crawled to the wall to help himself up off the ground. The consultant at this appointment ran blood tests. The tests came back with high CK levels and Harry was diagnosed with Duchenne Muscular Dystrophy. Duchenne is a life limiting, muscle wasting condition which although genetic can affect anyone. The condition means that dystrophin is not produced and that muscles slowly waste away. Children with Duchenne slowly lose their ability to walk, sit up, hug friends and family, feed themselves. The condition is life limiting.

Harry was diagnosed as the country went into lock down. It was horrible being isolated with no help given to us to help process this. Harry was six when diagnosed. Despite Harry now knowing what his condition means he lives his life to the full. He does scouting and swimming and is very brave. He has twice been nominated for Spirit of Corby award due to the daily courage that he shows. We love Harry to pieces and are so proud of how he deals with life and all of the challenges that come his way.

Patterns

Squares received

Card

Stitched by: Sarah Gilham