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. IT is a rare condition affecting just 100 babies a year in the UK despite 1 in 40 people carrying the defective gene. 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 being taken into hospital with feeding issues. We spent six weeks between our local hospital, Leighton, and Alder Hey learning how to care for Sophie and work all the medical equipment she needed. We arrived home in late August 2016 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.
We 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 who find themselves in this difficult and life changing situation, we are continuing to raise funds in Sophie's memory for ACT for SMA.
The Ally Cadence Trust for Spinal Muscular Atrophy (ACT for SMA) works closely with UK families, providing specialist equipment and emotional support to families affected by this devastating condition. They provide essential non-medical equipment and visit affected families at home or in hospital to provide emotional support. This support continues after the loss of the child. They are a small charity run by parents who lost their youngest child, Ally Cadence, to the condition nine years ago. They support a third of all UK SMA Type 1 cases every year.
To celebrate Sophie's life, Wayne will be running the Great South Run two years after we lost Sophie. He will be joined by family, friends and members of Sophie's medical team 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 devastated by SMA Type 1 in 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.