As a children’s nurse, Claire Penny was used to helping other families as her young patients braved battles with their health.
When her son Caleb was born five years ago, she learned what it was like from the other side.
The youngster was diagnosed with Down’s syndrome at five months old, and later developed a severe form of epilepsy known as Lennox-Gastaut syndrome.
The medication has some further health implications, with Caleb struggling to swallow and developing sleep apnoea – which means he needs a machine to help him breathe through the night.
Mum now giving back
Claire, who lives outside Inverurie, is now preparing to take on the Aberdeen Kiltwalk to thank her charity champions Charlie House.
And little Caleb has been putting on his own wee kilt as he helps his mum get ready for the challenging trek on Sunday, May 29.
Because of her profession, Claire has known all about Charlie House since the charity was formed in 2011.
Lockdown hit Penny family hard
Lockdown was hard for many families, but it was especially tough for the Penny clan.
Claire, her husband Dave and their two older children had to shield from March to July 2020.
“We didn’t leave the house or the back garden for four months,” the mum explained.
That’s when she called on Charlie House for help for the first time.
“In the first lockdown, when we were isolating, it was just a bit much.
“We got in touch and were welcomed with open arms.
“They’ve been fantastic ever since, even though it’s been strange for me being on the other side.
“I honestly didn’t realise how much they did for the whole family.”
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How Charlie House helped
Charity volunteers soon set up online sessions for 12-year-old Brody and nine-year-old Ayla.
Claire added: “They were really struggling not being able to go out and see anybody, but Charlie House arranged sibling art classes and socialising online.
“It was really helpful for them to mix with other children who have siblings with disabilities.
“The penny dropped for them, they realised they weren’t the only ones going through this.”
And when Caleb had brain surgery for his seizures last January, volunteers were on hand with words of comfort and advice for his worried brother and sister.
Kiltwalk challenge to help Charlie House
Claire has now formed a group of eight mums who will take on the tartan-themed 26-mile trek.
Together, they are known as Charlie’s Angels.
And they are raising money to go towards a new specialist care centre in Aberdeen.
Charlie House says it is “unacceptable” that north-east families have to travel more than 100 miles to get “support, respite and care when they need it”.
This new centre would right that wrong.
‘We try to live life as normally as possible’
Working at Royal Aberdeen Children’s Hospital, Claire became familiar with the problem afflicting local families a long time ago.
The mum said: “We try to live life as normally as possible, but it can be hard and we can’t leave Caleb overnight when he is on his machine.
“This would be somewhere to drop Caleb off, and we wouldn’t have to worry about him…
“During the night he can need his mask re-adjusted, so we can be up frequently checking on him.
“Another mum said she struggles to get her daughter out of the house and taking her to another centre is a real struggle.”
How are Charlie House crew preparing for Kiltwalk?
Last summer, when Covid restrictions meant the Kiltwalk had to take place virtually, Claire and her mum took part by walking along the old railway line from Dyce to Ellon.
This time, she is taking her nine-month-old Havapoo Teddy out for the odd short stroll while taking on longer jaunts by herself.
Earlier this week Claire, Emma Beattie, Joanne Jamieson and Lorna Ramsey pulled on their bright orange Charlie House shirts for a practice session around Ury Riverside Park in Inverurie.
You can donate to Claire’s fundraiser here.
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