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LoveQuiltsUK - Heidi-Lee's quilt

Heidi-Lee's quilt   (Quilt Coming Soon)

Born:November 2007
Illness: Spinal Muscular Atrophy

Theme: Princesses and Unicorns

Quilt will open soon, keep checking back!
Photo of Heidi-Lee

Child Interests

Heidi’s favourite colour is purple.
She loves to sing and draw. She will sing along to anything. She loves Disney and knows all the songs in her favourite films. Heidi also loves japan and all things kawaii. Which means ‘cute’ in Japanese she tells me! And as with most girls her age she loves unicorns!


Heidi started showing symptoms at around 9 months old when she couldn’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 isn’t like her friends at school.

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