The parents of a Midlothian schoolgirl who defied a terminal diagnosis are calling for backing for the hospice that continues to help care for her.
Doctors believed Chloe wouldn’t see six months after she was born three months premature, but she will celebrate her sixth birthday next month.
Her mum Mechelle O’Hara told STV News: “She was born with meningitis and sepsis, so was quite unwell in her first few days.
“They did some X-rays and discovered she had a cyst on her lung.”
STV NewsMedics performed surgery to remove as much of the cyst as possible and then Chloe had a brain MRI.
It showed she had sustained “really severe brain damage”.
Mechelle added: “They told us that the chances of her coming home were extremely, extremely small, because the brain damage was so severe.
“But she had other plans.”
Chloe requires round-the-clock care, which is difficult for Mechelle to juggle along with parenting Chloe’s two older siblings.
STV NewsSince the early months of Chloe’s life, the family been supported by the charity Children’s Hospices Across Scotland (CHAS) and their respite care service.
That means occasional trips to Rachel House in Kinross, but it also involves nurses visiting the family at home in Penicuik.
“I hand her over, they’ve got her care plans, and I can just walk away knowing she’s in safe hands,” said Mechelle.
“They know what to do, they can look after her, she’s happy.
“That peace of mind, knowing I can take one of the other kids somewhere, even just go to the shops or do some housework. and know that I don’t have to think ‘is she okay?’
“It doesn’t seem like it’s just a job to them. They’re more than happy to spend that time with Chloe.
“CHAS gives us that kind of care, that support that nobody else can.”
CHAS
STV NewsMechelle fears for other children and families who rely on CHAS, which she says provides an “invaluable” service.
“If we didn’t have CHAS, I’d literally be doing it all myself. I wouldn’t be able to do anything outside the home, no semblance of a social life.
“It’s really vital, the work they do for Chloe’s quality of life.”
CHAS says demand for its respite services have more than doubled and it has launched an urgent appeal for fundraisers.
Chief executive Rami Okasha said: “The demand has been soaring over the past number of years.
“Life is tough for these families and what we’re seeing is that the number of children in Scotland who have a life shortening condition is actually going up.
“We need to employ more nurses and doctors, the costs of doing what we do is going up.
“And we are urging people to get behind this appeal so that no one faces the death of their child alone.”
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