Sally Skipsey
Sally and Laura's Leicester's Big 10K 2018 page
Fundraising for ACT for SMA
Story
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Close friends had a beautiful baby called Noah who was diagnosed with SMA Type 1 and died at 15 months old. Noah was one of the happiest babies you could ever hope to meet. He had the most beautiful big brown eyes & the cheekiest smile you will ever see.
SMA stands for Spinal Muscular Atrophy; it is a genetic disorder that is currently incurable. SMA affects the motor neurons in the spinal cord & this results in muscles throughout the body becoming weaker and weaker. 80% of babies with SMA Type1 sadly pass away before their first birthday.
Throughout Noah's illness the family received incredible support from the Diana Nurses, Rainbows Hospice & above all ACT for SMA.
Emma and Karl founded ACT, the Ally Cadence Trust for Spinal Muscular Atrophy. They lost their beautiful daughter, Ally, to SMA Type1 eight years ago. Following their experience they felt that parents with recently diagnosed children needed support & information quickly.
ACT for SMA are there for families when they need them most, so please give generously, so they can be there for the next family who call them"
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