153 %
£460.03
raised of £300 target
by 26 supporters
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Wayne Harling avatar
Wayne Harling

John's Cheshire Cat Sportive Fundraising Cycle Ride

I am cycling in the Cheshire Cat Sportive event for ACT for SMA because it is the biggest killer of the children under 2

153 %
£460.03
raised of £300 target
by 26 supporters
Donate
  • In memory of: Sophie Harling
  • Event: Cheshire Cat Sportive, 26 Mar 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

Story

This year I am raising funds to support the amazing work of the Ally Cadence Trust for Spinal Muscular Atrophy. Spinal Muscular Atrophy Type 1 is a rare neurological condition that is characterised by a progressive and degenerative muscle weakness and a severely limited life expectancy. Although life expectancy is often quoted as 2 years, 80% of SMA Type 1 babies don't live to their first birthday. 

The Ally Cadence Trust for Spinal Muscular Atrophy provides specialist equipment and emotional support to families affected by this devastating condition. They provide car seats, pram, digital camera, box of sensory toys and an array of other equipment quickly, within a couple of days, to enable families to enjoy their time together. 

Ally Cadence Trust for Spinal Muscular Atrophy was set up in memory of Karl and Emma's fourth child who passed away due to SMA Type 1 at just 6 months old. Both Emma and Karl travel across the UK supporting families and they need financial assistance in order to provide this essential and vitally important practical and emotional support for affected families. 

Within the last year, a friend of my wife's has been affected by SMA Type 1. Sophie was born on 11th December 2015 to Wayne and Lizzie Harling and was diagnosed with SMA Type 1 in July after being rushed into Leighton Hospital with feeding problems. Sophie was given a feeding tube, regular chest physiotherapy,  hydrotherapy and medicines to help her reflux and secretions at Alder Hey. With this support, she was able to spend quality family time playing with toys and her favourite people. Sophie even managed to go on a family holiday to Disneyland Paris. Quick to smile, she charmed everyone who met her. Sadly, Sophie passed away peacefully on the 22nd October 2016, aged just 10 months.

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.

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