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Emma Hartley

Emma's Wear Purple for Eilys Day

I would like you to wear purple on Eilys' birthday for ACT for SMA because they helped Eilys and us so much

135 %
£678.00
raised of £500 target
by 108 supporters
Donate

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

Eilys looked good in most things but she looked particularly good in purple. It was definitely her colour so in honour of her on what should have been her 2nd birthday on 12th June I'd like you to wear purple and then donate just £1 to the Ally Cadence Trust for Spinal Muscular Atrophy. This charity allowed us to go on so many amazing adventures with Eilys by using the car seat that they lent to us. They allowed us to record some brilliant memories using the GoPro that they lent us. They sent us on lovely family holiday to Center Parcs where both Dylan and Eilys were able to make some wonderful memories together and we were able to chill as a family. They gave us medical equipment to help us monitor Eilys condition. They gave us advice and support throughout her illness and after she died but most of all Emma and Karl gave us friendship. They really are an incredible charity and Eilys would be so proud that we were still supporting them in her name.

A bit about Eilys and our journey...

My beautiful daughter Eilys was diagnosed with Spinal Muscular Atrophy type 1 just before christmas last year. We had loads of wonderful adventures with her and packed loads into her short life. She went on a boat, she had lots of lovely holidays with her family, she went to the zoo, to farms and had a smile on her face every day. She sadly passed away on 28th June 2016 just 2 weeks after her 1st birthday.

After we had this devastating diagnosis we got in contact with the Ally Cadence Trust for SMA and they were so incredibly helpful. Emma and Karl came to visit us and talk to us about their story. They had lost their daughter, Ally, 7 years ago to SMA type 1 and they set up the charity to help families with the same diagnosis as they were so let down by the charities that were suppose to help them and by the health care services and they didn't want any other families to go through it alone. Luckily for us we had an amazing bunch of people helping us from the NHS and Eilys received the most incredible support and care. Unfortunately there are a few things that the NHS can't put in place quickly like assessments for specialised car seats and pushchairs etc and this is where The Ally Cadence Trust stepped in. ACT gave us a specialised car seat so that Eilys could lie flat in that car (really important for babies with SMA type 1 as they can't hold up their heads and it aids their breathing), the wheels for the car seat, a pushchair, an apnea monitor (that we could attach to her nappy and it would alarm if Eilys stopped breathing), an oxygen saturation monitor (a little clip on her toe so we could see the concentration of oxygen in her body so we would know if Eilys was in difficulty), fibre optic string lights for Eilys to play with, a box of appropriate toys and a GoPro (for videoing in the bath, in the swimming pool etc etc). All these things were so incredibly helpful and improved Eilys' quality of life no end. But they provide more than just "stuff" Emma and Karl are also on the end of the phone 24hrs a day 7 days a week for families to contact to have someone to talk to which is so incredible and helpful. Knowing that there was someone there to talk to us who had been in the same situation was just brilliant. Since Eilys died they have been just as supportive to us as a family.

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.

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