Heidi received her quilt today.
I just want to say Thankyou to each and every one of you who put time, effort and love into it. Itâ€™s absolutely amazing.
I hadnâ€™t told her about it at all so it was a really nice surprise, and she has studied each square and read where itâ€™s from. She loves it, you all did a brilliant job. Thank you
Heidi started showing symptoms at around 9 months old when she couldnâ€™t bend her feet flat, and had balance issues. For years we went back and forth to Doctors who were insistent that she was just a tiptoe walker and with a bit of Physio would grow out of it.
After a year or two Heidi had a muscle biopsy, nerve conduction study, brain scan, and finally a blood test that confirmed a diagnoses of spinal Muscular Atrophy, a rare degenerative genetic muscle wasting disease, which has no cure.
Over the years Heidi slowly started to lose her abilities. She went from being able to walk longer distances, to mainly using her wheelchair. She can still walk short distances for the time being but she gets so exhausted and achey that she prefers her wheelchair.
She is a happy determined girl, but she now realises her limits and can get upset and down that she isnâ€™t like her friends at school.