Story
As many of you will know, Julie and Andy’s grandson and Nick’s nephew, Ollie, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 when he was 3 months old.
SMA is a rare genetic neuromuscular condition causing complex disability as it affects the muscles used for breathing and swallowing as well as basic movement. Until recently the life expectancy for a child diagnosed with Type 1 SMA was just 2 years, but thanks to new treatments, including gene therapy, there is much more hope for children with SMA.
It’s been a rollercoaster year for Ollie and his parents with many hospital stays, lots of new care needs and treatments, but despite it all Ollie has smiled and achieved so much. Ollie’s Nana (Julie), Grandad (Andy) and Uncle Nick wanted to celebrate Ollie’s achievements with a fundraising event. So, in early April (date TBC) they will be walking from Dover to Dungeness (26.2 miles) in a day to raise money for a charity that has been very important to Ollie.