Jack P's quilt    (Quilt Open)

Theme details

Trains - Can we get Spiderman/Batman/both on the label?

Child Interests

Jack is train mad, he loves them. He also loves superheroes such as Batman, Spiderman etc.
His favourite colour is blue.

Biography

Jack was born healthy following a normal pregnancy. We had no concerns but as Jack got older we noticed that he was late with all of his gross motor skills. He was late rolling over, sitting up, crawling, standing and walking. We went into lockdown when Jack was 6 months old so he didn’t see a health visitor for a while, as he normally would have done. Each time we mentioned our concerns though about his late development, when we did see someone, we were always reassured there was nothing wrong and each child develops at their own pace.

Jack started walking when he was around 2 years old, we were again reassured this was normal. Everyone told me once he started walking there would be no stopping him. However 6/9 months later at nearly three Jack still walked like he had only just started, very wobbly and not very far. He also would fall often and wasn’t good at climbing etc.

We eventually got referred to the hospital, but again were reassured they didn’t think anything was wrong as in all other areas he was developing fine. They did a blood test to rule things out, however that test showed Jack has Duchenne Muscular Dystrophy, a progressive muscle wasting disease for which there is no cure. This will slowly paralyse Jack before cutting short his life.

Jack is now 5 and is a beautiful, happy boy. He has recently started a high dose of steroids which he will be on for the rest of his life. It is hoped this will slow down his deterioration. The steroids however cause Jack to have brittle bones, to be immune suppressed and to be adrenal insufficient.

Jack now uses a wheelchair in school and when we are out and about. We are in the process of moving house as our current house cannot be adapted enough for Jacks future needs. He struggles to run, jump and keep up with his friends but tries his very best each day.

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