Glasgow boy with very rare condition secured 'life changing freedom'

Beau Pallester has Waardenburg-Shah syndrome and Hirchsprung’s disease, which means he struggles with mobility and is non-verbal.

The four-year-old requires a lot of physiotherapy which can be difficult and draining for the youngster.

Now he has been given a specially adapted trike which allows him to enjoy the process, which is already helping make “huge changes” in his condition.

Beau is enjoying his trike (Image: Sourced) Beau’s mother Nicola Carey said: “Beau still isn’t walking or crawling, and we found that the physiotherapy provided by the NHS wasn’t having as much of an impact as we’d hoped for and expected.

“His physiotherapy is really important as Beau needs to build up muscle tone. So, I’ve done a lot of personal research into different therapies. We’ve tried all sorts including hydrotherapy and dynamic movement therapy (DMI).

“DMI therapy has really helped, but we have to pay privately for it and it’s not cheap.

“While these things are great, they feel very clinical, and we wanted to try and make physio seem like less of a chore for Beau.”

Nicola continues: “The trike has been incredible. We’ve seen a huge change in Beau’s mobility and his head control has really improved.

“It is also nice for him to have something that’s a bit of fun. Ultimately the trike enables him to do his essential physio exercises but without him knowing it. It feels much more like play.”

Beau’s condition affects around one in every 40,000 babies and can vary in severity from one person to the next.

At a cost of over £2000 for the specialist trike, which is adapted to suit Beau’s complex needs, his family reached out to Children Today for support.

Thanks to match funding from the Kilpatrick Fraser Charitable Trust the children’s disability charity was able to provide the trike.

Nicola explained: “Beau has had a difficult start in life. We realised something was wrong quite early on as he wasn’t feeding and hadn’t had any bowel movements.

“The doctors took some biopsies and confirmed Beau had Waardenburg-Shah syndrome and Hirschsprung’s disease.

“I wasn’t sure what to expect at first as it affects people differently and there’s very little support and guidance, as it’s so rare.

“As a parent you just want the best for your child, but the additional costs of raising a child with a disability often mean we have to make difficult choices. It would have taken a long time to try and raise the money needed for the trike, so we’re incredibly grateful to Children Today and Kilpatrick Fraser Charitable Trust for their support. Thank you!”

Emma Prescott, charity director at Children Today, says: “We’re very thankful for our partnership with the team at Kilpatrick Fraser Charitable Trust, who helped with matched funding alongside ourselves, to help this Beau get the equipment he so desperately needs.

“It’s a joy to see little Beau enjoying his trike while getting the exercise he needs to help build his muscle tone.

"A rigorous physiotherapy regime is clearly essential for Beau, but it can be really tough going on little ones, so it’s great that his trike is helping to make these crucial exercises more fun for Beau.”

Alexander Kilpatrick, trustee of the Kilpatrick Fraser Charitable Trust, added: “We are happy to be working with Children Today to help make life easier for the young children who need our support in Scotland.

"It’s fantastic to see how this trike is having such a positive impact on Beau’s development.”

To find out more about Children Today, to apply for support or make a donation visit www.childrentoday.org.uk.