Mum of disabled boy receiving treatment in Sheffield describes sadness at son not being able to play with pals

The mother of a young boy with a muscle-wasting condition has spoken out after facing accessibility issues with public play areas, and turning to the pool for an inclusive environment for her son.

Seven-year-old Elijah, known as Eli, suffers with Spinal Muscular Atrophy Type 2, a genetic neuromuscular condition causing the muscles to weaken and waste away, leading to loss of movement.

When he was just four, he started taking swimming lessons to build up strength and stamina which he has continued twice a week ever since, and won medals for.

Eli’s mum, Emily, said: "He always feels a lot more confident when he’s swimming, because once he’s in the water, he looks the same as any other child. 

"It’s been a great way of helping him understand that his disability doesn’t need to be seen as a hindrance, especially now he’s reaching an age where he occasionally gets frustrated with being disabled.

"He uses that time in the water to make friends and socialise."

Eli also enjoys playing mini golf, which he does from his wheelchair, and is learning to play piano - but accessibility in public spaces still proves to be a challenge for Emily.

She said: "Plenty of places still see accessibility as an inconvenience rather than a necessity, failing to recognise the huge impact inclusion can have. 

"Children with disabilities deserve to feel included and have access to the same activities as anybody else and if inclusion became the norm, disability would no longer be seen as a rarity."

A recent trip to a play area "ended in tears" after Emily had to explain to Eli that he would not be able to play in the same way as the other children, since it was not accessible.

She added: "Having seen the heartbreaking effect that exclusion has had on Eli previously, seeing more places being better-adapted is definitely a positive. However there’s a lot of work still to be done.

"Seeing him join in with activities that may not have been accessible just a few years ago, such as mini golf and bowling, is wonderful – he can play with his peers and just enjoy being a child. 

"We just hope that more places realise that this inclusivity is beneficial and follow suit."

Before a genetics investigation led to his SMA diagnosis, Eli was diagnosed with Spina Bifida, as his spine and spinal cord did not develop properly in the womb, leaving a gap in his spine.

Eli has appointments at Sheffield Children’s Hospital every 16 weeks for treatment with Nusinersen, a medication which fixes the error on the relevant gene, and delays muscle wastage.

He gets medical care in Sheffield, despite living in Leicester, because Sheffield Children’s can provide multidisciplinary care for both his conditions and individual support for him and his family.

Emily said: "This treatment will be a lifelong one, so Sheffield Children’s will likely be stuck with us for a good few years to come!

"Sheffield Children’s and its staff have been absolutely incredible, every person we’ve come across has been so lovely. Eli is comfortable with each member of the team and the care they provide him with has massively improved his quality of life. 

"They make the journey to Sheffield so worth it."