A Midlands mum, whose son receives vital care and support from Acorns Children’s Hospice is calling on supporters to join her and suit up for the charity’s Santa Run this December. Here, Claire Young reveals why money raised through the festive fundraiser is so important for families like hers.
Loving mum Claire Young knows only too well what a difference money raised for Acorns Children’s Hospice makes to children and families.
At three years old, her little boy George was diagnosed with Batten Disease, an extremely rare form of childhood dementia which affects just 150 children and young people in the UK.
The onset of the particular variant of the condition that George suffers from, CLN8, has caused a rapid deterioration in his speech, mobility and ability to swallow. This means ‘gorgeous George’ needs 24-hour, one-to-one care for everything.
Claire explains: “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 skills, his 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 his gastrostomy tube through his tummy.”
In every other respect, Claire says, George is still a ‘typical five-year-old boy’ who loves getting messy, listening to music and being outside.
“In many ways his mind is still there, and he still wants to do things, but his body is just continually failing him,” she adds.
Which is why the support the Kenilworth family receive from Acorns is vital. As well as benefitting from short breaks, stay and play sessions and respite care at the Three Counties hospice, George is a big fan of their hydrotherapy pool.
Claire explains: “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 him such 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.”
Next month Claire, husband Simon and little George will be among the hundreds of supporters getting into the seasonal spirit for Acorns annual Santa Run.
The festive fundraiser, which is taking place on Saturday 8 December, will see good girls and boys (of all ages) raise money for Acorns and help the charity continue its vital work caring for life limited children like George.
Claire says: “We’re really excited to be taking part in this year’s Santa Run. It’s going to be so much fun!
“Please join us by signing up and supporting this incredible charity. All the money raised goes directly to Acorns and really does make such a difference.”
Acorns Santa Run is Birmingham’s biggest festive fun run. This year’s event is being ho-ho-hosted at Aston University.
Sam Greatrex, Acorns Senior Events Officer, said: “Santa Run is a magical event and the perfect chance for people to support a great cause while soaking up the festive atmosphere.
“We rely on fundraising events like this to raise the nearly £10million we need each year to run our hospices. So why not the bring the family together for Santa Run and make it a truly festive day out with a visit to the Birmingham Frankfurt Christmas Market afterwards, which is just a short walk away?”
Registration for Acorns Santa Run is £15 for adults (over 16), £10 for children (aged 5-15) and free for children (four and under). Super Santas, who raise £100 or more will receive free entry to the event.
All entrants (aged five and above) will receive a free Santa suit and fundraising pack to help you jingle all the way to your target.
For more information about Acorns, please visit www.acorns.org.uk
Photo caption: Claire and George Young are calling on people to sign up for Acorns festive fundraiser.
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Notes to editors:
Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.
- This year Acorns is celebrating its 30th Acorns in Birmingham, Selly Oak was opened in 1988 by HRH Diana, Princess of Wales. Acorns in the Black Country, Walsall opened in 1999 and Acorns for the Three Counties, Worcester opened in 2005. To find out more visit www.acorns.org.uk/30years
- Acorns is currently the UK and the world’s largest children’s hospice charity, as measured by the number of children it is helping to care for.
- It costs nearly £10 million a year to run Acorns services providing care for children and support for their families. The charity relies heavily on donations to fund the majority of its activities.
- To find out more about Acorns, please visit acorns.org.uk