My 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 our local hospital, Leighton, and Alder Hey. They arrived home in August determined that our remaining family time 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, we 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, we will be running the Great South Run a year to the day after we lost Sophie. We will be joined by family and friends both in the race and cheering on the sidelines. 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.
We will be working hard to train and get fit together! Every penny counts!
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