Isaac W's quilt    (Quilt Closed)

Theme details

Gaming - If there is a small legal Mario to go on the label, that would be good.

Child Interests

Red is Isaac’s favourite colour followed by blue and orange.

Biography

Isaac was born at 38 weeks, and we soon noticed very little movement and hypotonia. Tests were carried out which confirmed that he had spinal muscular atrophy (SMA) Type 1.

We were initially told that he had only six months to live and were advised to take him home and cherish the time we had with him. However, we were then given hope in the form of a clinical drug trial which Isaac was able to take part in.

Although he has had numerous hospital admissions over the years he has done incredibly well with very little deterioration. In November 2021 he received gene therapy and has thrived since then. However, he lost his ability to swallow and side effects from the gene therapy caused liver problems. As a result he required three years of steroids which led to adrenal insufficiency.

The last few years have been very up and down and he experienced an adrenal crisis that left him in a critical condition. Thankfully he has now gone six months without a hospital admission and is doing really well, continuing to gain strength and make progress.

Patterns

Squares received

Card

Stitched by: Audrey Taylor