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Our 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. We arrived home in August determined that our remaining family time would be spent making memories. Sophie travelled to Disneyland Paris, 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.
We received huge support not only from our local hospital and Alder Hey but also from the wonderful ACT for SMA. To help others in difficult situations, we are continuing to raise funds in Sophie's memory for ACT for SMA so they can continue to support affected families across the UK.
To celebrate Sophie's life, family and friends will be running the Great South Run to raise much needed funds for this amazing charity. On the day, 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 affected families all over the UK.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.