Here are a few words from Wayne and Lizzie Harling on just how important ACT for SMA were for them
ACT for SMA is a fantastic charity that helped to enrich the final couple of months we had with our baby daughter Sophie Harling who sadly died of Spinal Muscular Atrophy Type 1 aged just over 10 months old.
A nurse in our local hospital referred the charity to us and within a few hours, we were contacted by Karl and Emma. That same evening, this dedicated couple journeyed across the country to our hospital in Cheshire, arriving at past 11pm with a specialised car seat and pram that enabled us to safely go home after spending six weeks away.
Karl and Emma also brought along a box of exciting sensory toys such as a bubble machine and an LED light set which meant that Sophie was all smiles. On their second visit to us, this time at home, they also loaned us a digital camera and a GoPro so we could take countless high quality photos of her hydrotherapy and swimming sessions and her 10 month birthday party with all of her loving family.
ACT for SMA are always on hand with telephone support 24 hours a day and were always more than happy to visit us in person whenever we needed it. That offer of support continues for as long as a family needs it. Other invaluable support items they provided included a suitable bath seat, wedged pillows and a sleep apnoea monitor. All of the support they provide is absolutely free meaning we could get on with being a family again.
Without the help and support from Karl and Emma at ACT for SMA, our journey with Spinal Muscular Atrophy would have been immeasurably more difficult. It is thanks to this charity that Sophie was able to spend her last couple of months at home where she belonged, surrounded by lots of toys, and of course, her loving Mum and Dad.