Jake B's quilt   (Quilt Completed)
I have just come home to swap for the night with my husband as Jake is still in hospital and my goodness I'm in tears (happy tears) I've just opened Jake's quilt. It is more beautiful than I even imagined! You have no idea what this means to us. Thank you thank you thank you
Quilted by: Heather
Jake is a 6 year old boy. We noticed at around 6 weeks old something was not quite right. It started off with visual issues. We learnt at 8 months old after lots of tests that what we were looking at was neurological. After a second brain MRI at 3 years old, which showed parts of his brain had disappeared and linking these results with a genetics team we were able to find his genetic mutation within the SEPSECs gene. It is extremely rare. It is degenerative so his condition causes him to lose motor function. He lost the ability to eat orally. He can no longer do anything for himself.