107 %
£215.00
raised of £200 target
by 17 supporters
Donate
Rachel and Tim Treagust avatar
Rachel and Tim Treagust

Rachel & Tim Running the Great South Run!

Fundraising for ACT for SMA

107 %
£215.00
raised of £200 target
by 17 supporters
Donate
  • Event: Great South Run 2017, 22 Oct 2017

ACT for SMA

The Ally Cadence Trust provides emotional and financial support to children affected by Spinal Muscular Atrophy Type 1, the leading genetic killer of under 2's with an average life expectancy of just 8 months. Children with SMA have very limited movement and may have breathing difficulties

Charity Registration No. 1133272

Story

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!

Thanks for taking the time to visit my JustGiving page.

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.

Photos

2

Supporters

17