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Susie Mcgraw avatar
Susie Mcgraw

I'm getting tough and muddy for SMA!

I am rising to the Tough Mudder challenge for ACT for SMA because I am inspired by my friend and her family

107 %
£215.00
raised of £200 target
by 17 supporters
Donate
  • In memory of: Eilys Hartley
  • Event: Tough Mudder Midlands Half 2017, 13 May 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

So you know me, never one to turn down a challenge or a new experience, a work colleague suggests we do the Tough Mudder, who am I to argue?!  Yes it'll hurt; yes I risk becoming a humiliating viral you-tube star as I flop my way round the course; but yes, it sounds like fun and I'll try (almost) anything once!  So what could help me break through the exhaustion and pain barriers?  Knowing a worthy cause is going to be benefiting from my adventure (that's your cue to donate!)....

As a mum to 3 (and step-mum to 2), I cannot imagine anything worse than losing a child.  My school friend Emma experienced just that in 2016, and while I feel such sadness for them, I also feel so inspired by the strength, positivity and determination to give Eilys as many experiences as possible in her short life Emma and her family showed throughout the most difficult period in their lives.  

They were supported by the Ally Cadence Trust to fulfil a wish list of experiences with Eilys, which have given the family precious memories to share.  They also provided specialist equipment to make Eilys as comfortable as possible and enable her to join in activities and outings as well as providing support for Emma and Joe as the Trust was founded by parents who had experienced the same condition and loss.

These are things we all take for granted, but when a life-limiting condition like Spinal Muscular Atrophy  affects a child's life, it is so important that charities such as ACT for SMA are there to help.  

Please visit www.actsma.co.uk to learn more about SMA and the fantastic work of the Ally Cadence Trust.

In Emma's words, this is Eilys' story...

Eilys Elisabeth Hartley was born on 12th June 2016. She was such a beautiful baby and everyone who had the pleasure of meeting her fell in love. She smiled easily and laughed a lot. She was a very happy and contented baby. To start with Eilys was hitting her milestones quite early and by the time she was a bit over 3 months old she was trying to roll over and nearly sitting up unaided. And then she stopped. We thought that she was maybe being a bit lazy and we tried not to worry too much about it. By the time she was 5 months old I started to panic about her lack of progression. I took her to see my health visitor, to the drop-in clinic, we went to the doctors etc. but were told over and over not to worry, that some babies are just a bit slower than others. But in my heart of hearts I knew that something was really wrong. Eilys then got bronchiolitis. She ended up in hospital and eventually had to have help breathing. As awful as this all was, during her stay in hospital our concerns about her were finally taken seriously. Her consultant did some tests and we were told to expect the results in around 10 days. Eilys made a speedy recovery and we were sent home to await the results.
On 11th December 2015 at Alder Hey children's hospital we were given the devastating news that our beautiful daughter had a condition called Spinal Muscular Atrophy Type 1. Eilys' consultant told us that it was a condition that caused weakening of the muscles and that it was a life-limiting condition. He told us that life expectancy was 18 months to 2 years.
That day my husband, Joe, and I decided that we didn't want to be sad while we had Eilys with us. We didn't want to waste any of the time she had. We made a list of things we wanted to her experience - things we felt were important for a child to experience. Eilys' Experience list included going camping, visiting a castle, going on lots of walks, trips to the zoo, farm and an aquarium.
One of the things on the list was that we wanted Eilys to try as many different types of food as possible and that very much included cake! Every time a family member had a birthday we would celebrate Eilys instead and I would make her a cake. She had 11 cakes in total, including the 4 she had on her actual 1st birthday.
Eilys had many amazing adventures in her short life and she smiled every single day. As a family we made lots of wonderful memories with her and for her big brother Dylan.
Eilys turned 1 on 12th June 2016 and she had a huge birthday party with loads of her favourite people. Everyone was asked to bring a helium balloon for her as they were her favourite things. She ended up with over 50 balloons!
Two weeks later, on 28th June, Eilys died peacefully at home while being cuddled by her Mummy, Daddy and big brother.
On paper, Eilys' life may read as 12th June 2015 - 28th June 2016 but she filled that dash in the middle with more adventures, love and laughter than most people who live to 90!



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