Harvey D's quilt    (Quilt currently being assembled)

Theme details

Mixture - Dinosaurs/space/Football (Swansea City) A good mixture please. Disney's Stitch on the label if possible.

Biography

Harvey was born with a life limiting genetic muscle wasting condition. It was a traumatic birth as we almost lost Harvey due to prolapsed cord and had to have an emergency c section as he was suffocating.

We didn't know about Harvey's condition until he turned 4, after years of him not meeting milestones, crawling, choking on foods, not walking. At 15 months he started physiotherapy and still continues to this present day.
When he reached age 3 we pushed for more tests and it was only because of an assessment for autism that made the hospital do a blood test which confirmed his CK levels were not normal and had high liver enzymes, so he had to go through more bloods tests a week later, which showed his CK levels were even higher than the last.

He was then sent to see a neurologist who told us that he may have a terminal muscle wasting condition. He then did more blood tests and sent them to be genetically tested. After 6 months we finally had our fears confirmed.

Harvey fights every day not just with Duchenne as things have become a lot more difficult for him but with being autistic as well. He has deteriorated a lot specially since lockdown, and he doesn't walk much any more because it's too painful for him. His chest muscles are getting weaker. He can't do things children of his age do any more and it's really frustrating for him. He sees other children playing whilst he has to attend all his hospital appointments.

Patterns

Squares received

Card

Stitched by: Deborah Desmond Clarke