Glasgow boy with rare disease gains ‘life-changing freedom’

Beau Pallester suffers from Waardenburg-Shah syndrome and Hirschsprung disease, which means he has limited mobility and cannot speak.

The four-year-old requires a lot of physical therapy, which can be difficult and exhausting for the young person.

Now he has been given a specially adapted tricycle that allows him to enjoy the process, which is already contributing to “big changes” in his condition.

Beau having fun with his trike (Image: Source) Beau's mother Nicola Carey said: “Beau is still unable to walk or crawl and we have found that the NHS physiotherapy has not made as much difference as we had hoped and expected.

“His physiotherapy is really important because Beau needs to build muscle tone, so I've been looking into a lot of different therapies. We've tried all sorts of things, including hydrotherapy and dynamic movement therapy (DMI).

“The DMI therapy really helped, but we have to pay for it privately and it is not cheap.

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

Nicola continues: “The tricycle is incredible. We have seen a huge difference in Beau’s mobility and his head control has really improved.

“It's also nice for him to have something that's a bit fun. After all, the tricycle allows him to do his essential physio exercises without him even noticing. It feels much more like a game.”

Beau's disease affects about one in 40,000 babies and can vary in severity from person to person.

As the special tricycle, adapted to Beau's complex needs, cost over £2,000, his family turned to Children Today for support.

Thanks to co-funding from the Kilpatrick Fraser Charitable Trust, the charity for disabled children was able to provide the tricycle.

Nicola explained: “Beau had a difficult start in life. We noticed early on that something was wrong as he wasn't eating or having a bowel movement.

“The doctors did some biopsies and confirmed that Beau had Waardenburg-Shah syndrome and Hirschsprung disease.

“I didn’t know what to expect at first as the disease affects everyone differently and because of its rarity there is very little support and guidance.

“As parents you want the best for your child, but the additional costs associated with raising a child with disabilities often force us to make difficult decisions. It would have taken a long time to raise the money needed for the tricycle, so we are incredibly grateful to Children Today and the Kilpatrick Fraser Charitable Trust for their support. Thank you!”

Emma Prescott, Charity Director at Children Today, said: “We are very grateful to have partnered with the team at the Kilpatrick Fraser Charitable Trust who, along with others, have helped us match funds to ensure Beau gets the equipment he so desperately needs.

“It’s a joy to see little Beau having fun on his tricycle while getting the exercise he needs to build his muscles.

“A rigorous physical therapy program is clearly essential for Beau, but it can be quite exhausting for little ones, so it's great that his tricycle helps make these important exercises more fun for Beau.”

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

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

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