Benjamin's quilt    (Quilt Completed)

Thank you

Thank you so much again for everyone's hard work on Benjamin's quilt. It is simply beautiful!!!

We received it today and Ben is so happy with it and quite amazed that there are people who wanted to do it for him!!!

Thank you so very much.

Finished photos

Individual squares

Card

Stitched by: Deborah Desmond Clarke

Biography

Benjamin's condition was diagnosed prenatally, when I had my 20 weeks scan. It was observed then, that the left pumping chamber of his heart was underdeveloped. When he was born, he was taken straight to the ICU for observation and had his first open heart surgery, while a tiny 5 days old newborn. For all babies born with HLHS, the surgical route is the same. They have to have 3 open heart surgeries in order to re-wire their circulation. Benjamin followed that path and had another open heart surgery at 6 months old and one more at 5 years old.

He tolerated the procedures pretty well, with some minor issues that he overcame. In 2022 however, he suffered with heart failure that at first looked so severe that he might need a heart transplant. His condition improved with medication and at the transplant assessment it was decided that he doesn't need to be put on a transplant waiting list.

Soon after the assessment Benjamin suffered another major problem. He suffered a haemorrhaging stroke and ended up in a coma for 17 days. He woke up from the coma just in time for his 7th birthday. He couldn't move or speak and his sight was severely impaired. He slowly started recovering with intensive physiotherapy. Now 18 months after his stroke he is wheelchair bound and he still cannot use his left arm, but he can take some steps. He is back in school part time as well. We keep on with exercises to improve his condition.