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 recieved 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.
Recently ACT for SMA had a setback, they had a funding application denied by Children In Need which they really needed to buy much needed equipment for families. And that is why I am trying to raise a little bit of money myself!
Right so what am I up to? As some of you know my wonderful best friend has organised a charity ball in Alton in Hampshire on October 1st (https://wearitagainball.wordpress.com) and I am going to travel the 245 miles to get there on public transport wearing a wedding dress*
I will be travelling on 30th September. The first part of my journey is a walk from my house to the train station in Crewe where I will get on a virgin train to London. Once at London Euston I will then be the nutter on the tube from Euston to London Waterloo. Then I'll jump on a South Wests Trains to Woking and then another train from Woking to Alton where I will pop to see my lovely Great Auntie Betty for a cup of tea.
So please, if you feel like you can, support me in my bonkers travel plans. I will be photographing, facebooking and instagraming my travels on the day so you'll be able to watch me and if anyone would like to join me for some of my journey that'd be cool too.
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.
*I'm not wearing my actual wedding dress as it's huge and would be dangerous but I have a wedding dress to wear and a veil