A Perth family who have come to depend on the CHAS children’s hospice at Kinross are urging the public to support the charity’s Christmas appeal.
Qusai and Esraa Al-Hamdan and their youngsters are regular visitors to Rachel House.
Their son and daughter Mohammed (Mo) and Elaine both have the same life-shortening condition
Ataxia with oculomotor apraxia is a degenerative disease. It leads to problems with movement, co-ordination and balance that worsen over time.
Mo, 16, started showing symptoms in 2014 when he was in primary two.
Genetic testing later revealed baby Elaine had the condition too.
Qusai, who is originally from Jordan, said: “It was a lot to take in and we struggled to know how to cope with it.
“We definitely were not prepared for how much of a huge impact Mo and Elaine’s diagnosis would have on all of our lives.”
‘CHAS Kinross hospice is our happy place’
Qusai was working full time as an aircraft engineering lecturer at Perth College at the time. He had to reduce his working hours significantly to help at home.
Esraa, a former high school teacher, became a full-time carer to her children.
The couple’s other children Zuhair, 17, and Layan, 14, also stepped up and became young carers.
Zuhair appeared on The One Show last year as part of the BBC’s Children in Need appeal.
Elaine is now 10 and her symptoms have progressed more rapidly.
She uses a motor wheelchair but can still use her walker a little.
Mo is in a wheelchair all the time.
Both children have enjoyed many visits to Rachel House in Kinross since being referred to CHAS in 2021.
Qusai said it was “a very happy place” for the youngsters – and their parents.
And he said CHAS’s support has been especially welcome recently after Esraa was in a car accident which left her temporarily unable to walk.
“It has been a difficult few years for us as a family with many challenges and worries. So we are very grateful to CHAS for being there for us and offering us such wonderful support,” he said.
“This is why we are backing this important Christmas appeal.”
CHAS needs £12M to help families next year
The Precious Memories Christmas Appeal aims to ensure that no-one ever has to face the death of their child alone.
It comes after the charity reported a 25% increase in requests from families of children with life-shortening conditions over the past year.
CHAS needs to raise more than £12 million this year to enable it to continue to deliver its services at the Rachel House and Robin House hospices and elsewhere.
As well as providing specialist end of life care, CHAS offers respite stays, bereavement advice and counselling, hospice at home and help with managing finances and debt.
Teams can help with care packages and home adaptations, as well as providing emotional and practical support.
You can donate to the CHAS Christmas appeal here.
The charity is also planning a Hairy Highland Coo trail across Perth and Kinross next summer,
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