Crewe Mum Emma Hartley launches Wear Purple For Eilys Day in memory of her daughter Eilys who passed away in June 2016 just 2 weeks after her 1st birthday.
Eilys was diagnosed with Spinal Muscular Atrophy type 1 in December 2015. After Eilys’ family received the devastating diagnosis they got in contact with the Ally Cadence Trust for SMA who were incredibly helpful. The Ally Cadence Trust for SMA was set up to help families affected by SMA. ACT helped with assessments for specialised car seats and pushchairs, and gave Eilys a specialised car seat so that she could lie flat in that car, the wheels for the car seat, a pushchair, an apnea monitor, an oxygen saturation monitor, fibre optic string lights for Eilys to play with, a box of appropriate toys and a GoPro. All these things were so incredibly helpful and improved Eilys’ quality of life no end.
ACT 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. Since Eilys died they have been just as supportive to Emma and her family.
Emma plans to celebrate Eilys’ life and raise money for ACT on the 12th June by holding a Wear Purple For Eilys Day.
Eilys’ mum Emma says “Eilys rocked purple and she wore a lot of it. Mainly because it suited her so much and also because it is my favourite colour too. Purple is now synonymous with Eilys for me. I would like to ask you to wear purple on 12th June this year to help celebrate Eilys’ life. I think it will be a lovely tribute to her memory. And I’d also ask that you donate £1 (maybe £2) to Eilys’ justgiving page to go to The Ally Cadence Trust for SMA a charity that helped us so much when she was alive and who continue to help and support us as a family now. My goal, which seems utterly impossible, is to get Eilys’ Butterfly Fund to £10,000 on her birthday. It currently stands at £6,916.59 which means that I would need 3,084 people to donate £1 which I am sure is unattainable but hey ho, that’s the goal!”
To celebrate Eilys’ life and support ACT wear purple on 12th June and donate £1 or £2 to Eilys’ Justgiving Page or text EILY52 £1 to 70070 (UK only) and post a pic of you on either Facebook, Instagram or Twitter with the hashtag #ImWearingPurpleForEilys so we can see how fabulous you all look!