Meet Beau
Adapted trike
The mother of a four-year-old boy from Whiteinch, Glasgow, has described how a specially adapted trike provided by a children’s charity has been transformational for her son.
Beau Pallester has a rare condition known as Waardenburg-Shah syndrome and Hirchsprung’s disease.
The condition affects around 1 in every 40,000 babies and can vary in severity from one person to the next.
In Beau’s case his mobility has been impacted meaning he requires a variety of physiotherapy solutions, he’s non-verbal and he has endured several operations.
His mum, Nicola, says:
“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.
“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).
“The DMI therapy has really helped, but we have to pay privately for it and it’s not cheap. We’ve also fundraised for a second-hand ‘Innowalk’ – a machine that helps move Beau’s limbs. While these things are great, they feel very clinical, and we wanted to try and make physio seems like less of a chore for Beau.”
4-year-old Beau Pallester has a rare genetic condition which affects his mobility and development
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 Today was able to provide the trike.
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 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!
“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!”
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