Family stories: How Edfest is helping Edward access vital therapies

Edward is a cheeky, bright and brave little boy living with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition that causes severe muscle weakness. Edward's family have been fundraising with Tree of Hope since 2020, before gene therapy became available on the NHS. Today, they continue fundraising for specialist therapies and equipment that help give Edward the independence and freedoms he enjoys.

We spoke to Edward's mum, Meg, about Edfest – a brand-new inclusive family fun day that celebrates accessibility and ensures disabled children are at the heart of the experience.

What is SMA?
SMA is usually caused by a deletion of the SMN1 (survival motor neuron 1) gene, which is essential for healthy motor neurons that control muscle movement. Without enough functioning SMN protein, muscles become weak and gradually waste away.

Edward has the most severe form of the condition, SMA Type 1, with symptoms appearing within the first few weeks or months of life. These symptoms include:

• Severe muscle weakness and reduced movement

• Poor head control and floppy muscles

• Breathing difficulties

• Difficulty feeding and swallowing

SMA affects muscles throughout the body and, before modern treatments became available, children born with Type 1 SMA were not expected to live beyond their second birthday. Today, a one-time gene therapy called Zolgensma is available on the NHS. It works by stopping the progression of muscle loss, meaning that the earlier a child is diagnosed and treated, the better their long-term outlook.

Zolgensma is considered one of the world's most expensive medicines, costing around £1.8 million for a single dose, and only became available on the NHS in 2021.

Edward was born in 2020 and began showing symptoms from just three weeks old. He was diagnosed at eight weeks of age.

What is Edward's family fundraising for?
Many families choose to fundraise for their child's medical treatment, therapies and specialist equipment through Tree of Hope when these costs aren't fully funded elsewhere.

For Edward, although gene therapy has stopped the progression of his condition, he still requires ongoing therapies and specialist equipment to help him thrive.

Megan explains that "we are currently campaigning and fundraising for more medical expenses. It's so expensive having a disabled child and so we need the funds for private care."

Edward's treatment plan includes:

• Weekly physiotherapy

• Intensive therapy blocks, including specialist therapy abroad

• Orthotics, including splints and spinal braces

• Mobility equipment such as walkers and wheelchairs

Like many families raising funds for their child's medical treatment, Edward's family continue to fundraise so he can access the support that isn't routinely available through statutory services.

Edfest!
Edfest is a brand-new inclusive and accessible family fun day taking place on 29th August at Chingford Rugby Club, from 12 noon until late.

Organised by Meg in aid of Edward's fundraising campaign, disability and accessibility have been at the heart of every aspect of planning.

Visitors can enjoy:

• An accessible fire engine

• A magician

• Children's entertainment

• Bouncy castles

• Floats

• Sensory areas

• A disco dome

• Arts and crafts

• A story corner

• Food and market stalls

• Evening entertainment featuring a DJ and live band

Tickets can be booked online at www.edfest.org.uk, or purchased on the day. Admission is £5 per adult, with free entry for children.

What is Edfest all about?
After feeling excluded from many community events, Meg wanted to create something different.

While accessibility is central to the event, there's something for everyone, regardless of age or ability. Separate areas will cater for children wanting noisier activities, including bouncy castles and obstacle courses, while quieter spaces will offer sensory experiences and arts and crafts.

There will also be art therapy sessions for siblings of disabled children, helping them explore grief and navigate difficult emotions.

Parents haven't been forgotten either. They'll be able to enjoy a dedicated coffee area for a well-earned break before the entertainment continues into the evening with live music and a DJ.

Supporting Edward and Edfest
If you're unable to attend Edfest but would still like to support Edward's fundraising journey, you can donate to his Tree of Hope fundraising campaign.

You can also support the family by sharing Edfest on social media, interacting with their posts and bidding in their online auction.

If you're a business owner, or work for a company that could help, raffle and auction prize donations would be hugely appreciated.

Why fundraise with Tree of Hope?
Hosting a large-scale fundraising event like Edfest takes a huge amount of planning and support. For Meg, fundraising with a registered charity has made a real difference.

She believes Tree of Hope has given "authenticity to our campaign" particularly with "asking for raffle prizes and auction prizes. Obviously, [Tree of Hope] is a registered charity, so the people that are donating big prizes, they just know that it's for the right cause and that we are going to use the money for what it's meant to be for."

Fundraising through a registered charity like Tree of Hope can also provide reassurance to donors and businesses, helping families build trust while raising money for private therapies, specialist equipment and medical treatment. Families can also benefit from charity fundraising expertise, Gift Aid, and support with grant applications, allowing them to focus on what matters most—their child.

We're delighted to be supporting Edward and this incredible inclusive family fun day. If you're local to Chingford, we'd love to see you there on 29th August. If you can't make it, you can still support Edward's fundraising campaign and help him continue accessing the therapies and equipment that make such a difference to his life.