Airdrie family grateful for CHAS charity's support
Chloe and Chris Smith, from Airdrie, have praised staff at Robin House, a hospice run by Children's Hospices Across Scotland (CHAS), for helping them create memories with their daughter Ellie.
Ellie was diagnosed with Miller-Dieker syndrome, a rare brain disorder, when she was just over two months old.
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The condition caused the surface of Ellie's brain to be completely smooth and meant she suffered from seizures, developmental delay, weak muscle tone, and struggled to swallow or breathe.
The family visited the hospice for respite support when Ellie was 17 months old, staying for three nights.
Chloe said: "The staff at Robin House made us feel so welcome and because we had never left Ellie before, we said we wanted her to be in the room with us rather than in her own room.
"This wasn't a problem and they said we could do whatever was best for us."
Chris said: "That really put our minds at rest and once we settled in, we went out for a family walk together in the sunshine.
"We hadn't been out for a walk with Ellie in her pram for so long because she'd had been ill with a respiratory virus, so it was amazing to get out and about."
Chloe and Ellie (Image: Supplied)
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As part of their visit, the family were able to fulfil their wish of taking Ellie swimming.
Chloe said: "She absolutely loved it.
"Ellie really enjoyed bath time, so we knew that she'd love the pool because it was relaxing and warm for her."
Chris said: 'It was just amazing seeing Ellie chilling out in the pool, she even fell asleep.
"Our family also got to see her in the pool which was really special.
"It really was the best part of being at Robin House and fulfilling that wish."
As Ellie's condition deteriorated, the couple were supported by CHAS at home nurses, so Ellie could spend her final days at home, surrounded by family.
She passed away peacefully at home in her mum's arms, with her dad by her side, on November 9, 2022, aged just 20 months and five days.
Chloe said: "Ellie was such a contented wee girl, she would smile with her whole face, which was magical.
"I know that we only visited Robin House once but one of the best things was that we were able to fulfil our wish to take Ellie swimming.
"It meant so much to us.
"CHAS gave us the chance to create so many special memories and it's something we'll treasure forever."
CHAS has launched the Joyful Memories Appeal, a new fundraising campaign which aims to provide families of children with life-shortening conditions access to respite care to help make special memories together.
Donations to the appeal can be made online at the CHAS website or by phoning 0141 779 6180.
Rami Okasha, chief executive officer of CHAS, said: "We are grateful to everyone who donates to our Joyful Memories Appeal to help the families we support make wonderful memories together that will last a lifetime."
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