Brave child who cannot stand, walk or crawl to inspire superhero-themed fun run

Henry Barnard, five, with his brother George, six. Picture EACH

Henry Barnard, five, with his brother George, six. Picture EACH - Credit: Archant

A brave child battling against a rare genetic condition which prevents him from the ability to crawl, walk, run or stand will inspire a superhero-themed inflatable obstacle fun run this weekend.

Henry Barnard has a rare genetic neuromuscular condition called spinal muscular atrophy (SMA), which affects motor nerves in the spinal cord.

The condition robs Henry of the ability to crawl, stand, walk or run, so he uses a wheelchair for mobility.

SMA not only affects movement - every muscle involved with eating and breathing is significantly weakened, so Henry requires medical support for eating, coughing and, at times, breathing.

The five-year-old has been visiting The Treehouse in Ipswich, run by East Anglia’s Children’s Hopsices (EACH) since he was 18 months old and benefits from an array of services including music therapy.

His mother Claire said that had been hugely helpful in boosting his confidence and ability to express himself, giving him what she described as “crucial emotional support”.

So Henry’s family are supporting EACH’s inflatable fun run at Trinity Park on Saturday, September 8.

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As well as encouraging runners to dress up as their favourite comic book characters, EACH has organised for 10 inflatable obstacles to be dotted around the 5km course.

Money raised will help the good cause to continue providing care for children like Henry and support for their families.

Claire said: “We know first-hand how crucial the services are that EACH can provide a child and their family.

“It’s been a lifeline for us and we’re so grateful to everyone who raises money for, supports and donates to this fantastic service. Fundraising for EACH goes directly to an outstanding local service that benefits an entire family in need of support.

Superheroes taking part in EACH’s latest fundraising event will go off in four waves at 10am, 11am, 12pm and 1pm.

It costs £20 per adult and £10 for children aged between five and 15.

A family of two adults and two children costs £50, while a team of at least six people costs £16 per person.

Tickets include a t-shirt and a medal. Under-fives go free.

Helen Chapman, EACH Suffolk fundraising manager, said: “It costs £170 for a session of music therapy that benefits children like Henry, so this event could hopefully pay for plenty.

“There will be a best-dressed prize up for grabs. This is really set to be a fantastic day, so please do come along and run, jog, walk or bounce your way along the course.”