Fundraising News
Accessible community festival ‘Edfest’ to take place in August in Chingford
14 Jul 2026
A Chingford mother is holding a fully-inclusive community festival to help raise fund for her son who has a rare genetic condition.
Edward Willis-Hall, 5, who lives in Chingford, was one of the first children in the UK to be treated with the £1.2m Zolgensma in the UK after being diagnosed with Type 1 Spinal Muscular Atrophy (SMA) just seven weeks after he was born at Colchester Hospital. SMA1 hit the headlines recently when Little Mix’s Jesy Nelson’s twins were diagnosed with the condition.
Seemingly entirely healthy at birth, Edward was rushed to hospital after turning blue in the car and needing to be resuscitated.
He was initially diagnosed with bronchiolitis and put into a medically-induced coma. A few days later, his parents were told he has the genetic neuromuscular condition SMA1.
Until 2017, no treatment was available for SMA1 and children were not expected to live beyond the age of two. Now the prognosis is much better, though Edward is likely to need long-term support and therapies.
Edfest will be held at Chingford Rugby Club on August 29 from noon until late, with accessible children’s and family activities during the day, as well as designated quiet areas, and live music, a bar, DJ and raffle in the evening.
"Edward was lucky enough to be one of the first children to be treated with Zolgensma, it becoming available on the NHS shortly after he was diagnosed.
It is unbelievably expensive raising a disabled child. There is physio and other therapies to pay for, as well as wheelchairs, walkers, orthotics, back braces and more. As Edward’s carer, I can’t work, and as he grows, all his equipment needs replacing.
Edward is a bright five-year-old, a cheeky chappy who enjoys his mainstream school, loves swimming and horse riding and supporting Manchester United.
To enable him to live his best life possible, we have to fundraise constantly."
Edward's Mum
Edfest will include sensory rooms, inflatables, and assault course for disabled children, a magician and children’s entertainer, music, market stalls, DJs and more.
Megan added: ‘I wanted to create an event where disabled children can feel safe, both physically and mentally. It can be hard going out to public places when the ground is uneven, you can’t go on all the rides and maybe some people are staring. We probably won’t get it all right first time, but we will be trying our best and hope to make it an annual event.’ For more information or to book tickets (£5 for adults, free of charge for children and carers), visit https://www.edfest.org.uk/'
The family is being supported by children’s charity Tree of Hope, which helps families raise money for children and young people like Edward for medical treatments and healthcare services not reasonably available to them through the NHS or social care. The charity provides fundraising guidance, campaign development, financial management, charity registration and emotional support from the Family Support team. Families like Edward’s benefit from having the support, tools and resources to fundraise effectively as well as access to gift aid, corporate support while also providing donor reassurance.
"We wish Edward and his family all the best with their fundraising activities. We are pleased to give them support in reaching their fundraising goals.’
CEO
To donate to the Help for Edward fund, visit https://www.treeofhope.org.uk/get-involved/childrens-campaigns/help-for-edward/
Follow Edward's campaign on Instagram: @helpforedward
Learn more about Edfest on Instagram: @_edfest_
