It's not until you're in that position you realise just how important CHAS is ... to the whole family

Published date05 January 2022
Publication titleAirdrie & Coatbridge Advertiser
And although she lives with the knowledge that her two daughters may, like her, be carriers of the faulty gene responsible for her boys' illness, each time she leaves children's hospice, Robin House, after a period of respite, Debbie is a mum who feels lucky

Her first child, Rebecca Glasgow, was only five years old when brother Cameron came into the world at Wishaw General Hospital on January 20, 2004, four weeks prematurely.

Weighing just 3lbs 13oz, baby Cameron spent three weeks in the hospital's neonatal unit before going home to his family.

But after his third set of immunisations, Debbie woke to find her baby in the crib next to her, with one side of his body convulsing.

He was taken to Wishaw General by ambulance, where medics did blood tests and the counts seemed normal.

"They checked his haemoglobin, white count, platelets - everything," explained Debbie.

"But as things progressed, they realised there were a lot of problems going on and at that point he was referred to Glasgow.

"He was four months old. He looked like a perfectly healthy little boy."

An MRI scan revealed that baby Cameron had a small cerebellum - the part of the brain that plays a vital role in movement and balance. With dangerously low blood counts, Debbie and her husband took Cameron to Glasgow up to three times a week for transfusions.

"They put him forward for a bone marrow transplant, and Rebecca was the perfect match," explained Debbie.

"She was only five. It was a big thing for the family. But when in hospital, he took a bad turn. It was his breathing."

After further tests, doctors diagnosed pulmonary hypertension - a type of high blood pressure that affects the lungs' arteries and the right side of the heart.

Knowing Cameron's little body would not tolerate chemotherapy, a transplant was no longer an option.

"He was two. There was no cure. They didn't know what the future held for him," said Debbie.

The steroid that was administered to stimulate body movement had to be halted when it began to affect his liver and kidneys.

"Cameron lost 90 per cent of his vision and was registered blind," explained Debbie.

"He could not walk or talk, but he could crawl like the clappers. If there was a crawling event at the Olympics, he'd have won gold. We had 30 to 40ft of oxygen tubing, so he could go absolutely anywhere he wanted - and he did.

"He was a character and so determined. He was ventilated so many times. Whenever he took an infection, he'd be drowning in the fluid in his lungs.


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