75 %
£375.00
raised of £500 target
by 23 supporters
Donate
Sally Skipsey avatar
Sally Skipsey

Sally and Laura's Leicester's Big 10K 2018 page

We are running for ACT for SMA because of the incredible support they offer families

75 %
£375.00
raised of £500 target
by 23 supporters
Donate
  • Event: Leicester's Big 10K 2018, 29 Apr 2018

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

Thanks for taking the time to visit our JustGiving page.

Close friends had a beautiful baby called Noah who was diagnosed with SMA Type 1 and died at 15 months old.  Noah was one of the happiest babies you could ever hope to meet. He had the most beautiful big brown eyes & the cheekiest smile you will ever see. 

SMA stands for Spinal Muscular Atrophy; it is a genetic disorder that is currently incurable. SMA affects the motor neurons in the spinal cord & this results in muscles throughout the body becoming weaker and weaker. 80% of babies with SMA Type1 sadly pass away before their first birthday.

Throughout Noah's illness the family received incredible support from the Diana Nurses, Rainbows Hospice & above all ACT for SMA. 

Emma and Karl founded ACT, the Ally Cadence Trust for Spinal Muscular Atrophy. They lost their beautiful daughter, Ally, to SMA Type1 eight years ago. Following their experience they felt that parents with recently diagnosed children needed support & information quickly. 

ACT for SMA are there for families when they need them most, so please give generously, so they can be there for the next family who call them"


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

1

Supporters

23