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Our close friends daughter, Sophie was born with Spinal Muscular Atrophy Type 1 - a rare genetic neurological condition which is defined by progressive and degenerative muscle weakness and a severely limited life expectancy. 80% of SMA Type 1 babies die before their first birthday. Due to her condition, Sophie struggled with head control and never managed to sit independently. She passed away suddenly on the 22nd October 2016, aged just 10 months.
Sophie was diagnosed at 7 months after spending six weeks between their local hospital, Leighton, and Alder Hey. Wayne and Liz were determined that their remaining family time with Sophie would be spent making memories. Sophie travelled to Disneyland Paris, met Mickey's Mouse, went back to her Water Babies Classes and managed to charm everyone she met. She always had a cheeky smile and twinkle in her eye, and adored playing with people.
They received huge support not only from Ward 17 at Leighton (our local hospital) but in Alder Hey and from the Ally Cadence Trust for Spinal Muscular Atrophy (a specialist charity for SMA Type 1 families). To help others in difficult situations, they are continuing to raise funds in Sophie's memory for ACT for SMA.
The Ally Cadence Trust for Spinal Muscular Atrophy works closely with UK families, providing specialist equipment and emotional support to families affected by this devastating condition. They are a small charity run by parents who lost their youngest child to the condition eight years ago.
To celebrate Sophie's life, Me, Lee and Wayne with a few more friends, will be running the Great South Run a year to the day after Sophie Passed.
Please support us in reaching our target amount which will ensure ACT for SMA can continue to provide essential support to families all over the UK.
Thank you x
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