When Megan Willis's son Edward was eight weeks old, he was diagnosed with Spinal Muscular Atrophy Type 1 — a rare genetic condition that affects the muscles used for movement, breathing and swallowing.
Out of that experience has come EdFest, an accessible family festival launching this Saturday at Chingford Rugby Club, and built from the ground up around children who too often find themselves on the edge of everyone else's fun.
"I wanted to create something truly inclusive where disabled children, their families and the wider community could come together, have fun and feel included," Willis said.
The festival runs from 12pm on Saturday 29 August at Chingford Rugby Club, 291 Waltham Way, E4 8AQ. Entry is £5 for adults and free for children. There will be entertainment, games and live music, alongside a sensory room and accessible activities — the kind of provision that decides whether a family comes along at all, or stays home again.
Word has clearly travelled. More than 250 tickets have already gone for this first EdFest. Money raised will go towards Edward's therapy and equipment, and towards raising awareness of SMA and other rare conditions.
That awareness work matters. SMA remains rare enough that many families first hear of it in a consulting room, the way Willis did, and a national trial to test newborns for the condition is due to begin.
More information is at edfest.org.uk, and Willis posts updates as @helpforedward on Instagram.
