Harvey D's quilt    (Quilt Completed)

Thank you

Just popped by to say that Harvey's quilt has arrived.

Harvey's journey is absolutely in awe of it, and myself also, it's amazing thank you so much to everyone who's taken the time to make it,

I used to cross stitch when I was younger, something I used to do with my nan.

The detail in everything is fantastic. He's already planned to take it with him to keep him comfortable in hospital in 2 weeks, it has really cheered him up this week as we are going through a pretty tough time at the moment xxxx we are forever grateful xx

Thank you once again, Harvey & family xxx

Finished photos

Individual squares

Card

Stitched by: Deborah Desmond Clarke

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.