Kenilworth mum's plea for people to join charity's Santa run to help care for disabled son

A Kenilworth mum is calling on people to sign up to a Santa fun run to raise money for a charity which helps care for her disabled son.

Monday, 19th November 2018, 4:51 pm
Updated Monday, 19th November 2018, 5:01 pm
Claire Young (left) with her son George

Claire Young and her ‘mischievous’ five-year-old son George will be among the hundreds of seasonal supporters suiting up for Acorns Children’s Hospice at next month’s Santa Run.

The event on Saturday December 8 at Aston University is being held to raise money for Acorns and help the charity continue its vital work caring for children just like George with life-limited conditions.

Claire said: “We’re really excited to be taking part in this year’s Santa Run. Please join us by signing up and supporting this incredible charity.”

George was diagnosed with Batten disease aged three, meaning he needs 24/7 care

Aged three, George was diagnosed with Batten Disease, an extremely rare form of childhood dementia which affects just 150 children and young people in the UK.

His condition has caused a rapid deterioration in his speech, mobility and ability to swallow. This means George needs 24-hour, one-to-one care for everything.

Claire said: “As a mum you never dream that it’s going to happen to your own child. He is completely dependent on me looking after him.

“Since his diagnosis the condition has really taken hold of him and from a mother’s perspective it feels very rapid. He has lost all of his language, walking and standing skills.

“He can just about sit up at the minute, but he needs lots of support in doing that. His swallowing is failing, and he’s now almost exclusively fed through a tube through his tummy.”

George was recently donated a 'P-Pod' by Kenilworth Round Table, a specially designed seat that provides the postural support he needs to be comfortable at home. Claire praised the organisation's generosity and kindness.

He also enjoys using Acorns' hydrotherapy pool at its Three Counties Hospice in Worcester.

Claire added: “Hydrotherapy gives him another way of moving his body. His legs are more functional under water than they are out of it, so it gives himsuch a freedom and independence as well as helping strengthen and tone his muscles.

“Like any little boy he’s full of mischief, loves messy play and being surrounded by people and listening to their chatter, so with all the facilities Acorns has to offer, it’s truly a place where George can thrive.”

Registration for Acorns Santa Run is £15 for adults (16 and over), £10 for children (five to 15) and free for under-fours. 'Super Santas', who raise £100 or more, will receive free entry to the event.

Entrants aged five and above will receive a free Santa suit and fundraising pack.

To sign up, call 01564 825023, email [email protected] or click here