We are doing the Midlands Tough Mudder on 20th May for ACT for SMA because they provide support to families with SMA babies.
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
Team Noah are taking part in the Midlands Tough Mudder (for the third time) on 20th May 2017. We are doing this to raise money for a fantastic charity called ACT for SMA.
"In July 2014 our amazing little boy, Noah, was born. For 5 months everything was perfect, then at Christmas that year we were shocked & devastated when Noah was diagnosed with SMA Type1.
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.
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.
Noah was such a fighter. Although he became progressively weaker, he remained healthy enough to stay at home with us, where my wife Robyn & I cared for him. Everyday he was happy & he brought such joy into our lives & to all those who met him.
In October 2015 Noah suddenly became very poorly & died, he was surrounded by his Mummy, Daddy and best friend Isambard the dog. He was 15 months old.
Throughout Noah's illness friends & family were amazing, however we also received incredible support from the Diana Nurses, Rainbows Hospice & above all ACT for SMA.
Emma and Karl founded 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.
Emma & Karl came to see us as soon as we called them & they spent ages with us, answering questions & discussing their experiences. They brought with them a new travel system for Noah, sensory light weight toys, monitors and a camera. They organised a long w/e at Centre Parks for us & advised us to start doing activities with Noah, such as going to the beach and the zoo, which we did, creating memories that we will treasure for ever. They still continue to provide on-going advice and support. Without their help, we could not have coped as well as we have.
ACT for SMA were there for us when we needed them most, so please give generously, so they can be there for the next family who call them".
Ed Reynolds (Noah's Dad)
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.