Airdrie & Coatbridge Advertiser
It’s not until you’re in that position you realise just how important CHAS is ... to the whole family
Mum tells how precious time spent at Robin House has helped not just her boys, but all her loved ones
Debbie Ramage’s elder son was only five years old when he lost his battle with the rare, genetic condition that went on to affect his younger brother.
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.
“We lost count of how many times he was in intensive care. While other children around him were heavily sedated to stop them pulling their tubes out, Cameron would sit in intensive care, painting and playing musical instruments. He couldn’t tell you, but he knew the tubes were there to help him. We were told so many times to prepare ourselves, but he always bounced back.”
Debbie was pregnant with her second daughter, Jasmine, when the Glasgow family were introduced to Robin House in Balloch and Jasmine was six weeks old when they had their first residential stay.
“I was reluctant at first. You hear the word ‘hospice’ and you think of sadness and death,” remembers Debbie.
“The minute you walk through the door, any thoughts you had of it are totally reversed. There’s laughter, kids running about, and so much happiness. It was a godsend for all of us – the whole family.
“It was great to recharge your batteries for a couple of days. And Cameron loved the sensory room and the hydrotherapy pool.”
Although he enjoyed a happy summer in 2008, Cameron’s health deteriorated the following winter and he was again hooked up to a ventilator in Glasgow Children’s Hospital.
Debbie was staying at the nearby Ronald Mcdonald House when she received a call in the night to report that he had taken a turn for the worse.
When high frequency oscillatory ventilation failed to improve his condition and Cameron returned to a normal ventilator, doctors warned his parents that there was a chance he might not make it.
“When you have got a child who is not well, you want to keep them forever, for selfish reasons, maybe,” said Debbie.
“But we decided the next day we couldn’t keep him any longer. The ventilator was keeping him alive.”
It was then, on May 7, 2009, that little fighter Cameron passed away in his mum’s arms. “He exceeded all expectations,” said Debbie.
“They didn’t think he would
reach the age of five. He had squared up to death so many times and said: ‘It is not my time.’ But he was tired.
“He was such a loving little boy. He was full of mischief, but a gentle, placid boy.
“He loved cuddles and loved being with people. He went to Rigside Nursery and loved it there. He thrived on it and they were amazing with him.
“After he passed away, they named the Cameron Glasgow Sensory Room after him, for all children, but especially the children who had extra support needs.” On Cameron’s death certificate, among other complications, is Hallermann Streiff Syndrome (HSS) – a congenital disorder that affects growth, including cranial development.
And although Cameron displayed many of the characteristics of the condition, doctors didn’t ever find the faulty gene.
Like many couples who face the heartache of losing a child, the strain on Cameron’s parents’ marriage was too much to bear and they separated. A few years later,
Debbie found love again and, at the age of 39, became pregnant with a baby boy.
Because she went into labour at only 34 weeks and there were no neonatal beds available at Wishaw General, she was transferred to the Queen Elizabeth II Hospital in Glasgow, where she delivered baby son, Kenzie Ramage, on November 3, 2013.
He was exactly the same weight as his brother, Cameron. “It was a straightforward, natural birth. He was small and jaundiced, but everything was fine,” explained
Debbie. The scans were quite indepth. They looked at the structure of the head, the cerebellum, heart and kidneys – and everything was as it should be.”
When Kenzie was slow to reach developmental milestones, Debbie put it down to his early arrival and kept her niggling concerns to herself.
In February 2015, Debbie and her partner consulted their GP, who referred Kenzie to the paediatric unit at Wishaw General to help set the family’s mind at ease. There, they took blood tests.
“But hours later, staff called to say results were irregular and called them back the following day to be told Kenzie’s bone marrow was failing. We went back to Glasgow and they did an MRI scan and it was pretty much like for like with Cameron’s – a small cerebellum, and his heart, kidney and liver were perfect.”
Medical advances meant that steroids could regulate Kenzie’s counts without complications, and he took his first steps at the age of two with the aid of a walking frame, physio and occupational therapy.
“One day, the frame was thrown to one side, and he ran,” said Debbie. “Now, he’s running about wild.
“His balance is not so good, but he’s as wild as heather.
“When he was two, he went to speech and language therapy, but was signed off because the words just came. The boy we thought would never walk or talk is the most chatty wee boy you could ever meet.”
With some apprehension, Debbie and her daughters took Kenzie – who was diagnosed with ADHD last summer – to Robin House for residential respite.
“The minute I went back, I was so glad. There were so many faces I recognised, and new people too – but by the end of the first visit, it was as if we had known them forever.
“Staff are so genuine, so caring and understanding. Kenzie loves
it there. Whoever has him for the day has to have their trainers on, because he is all over the place. We all get so much out of it.”
Robin House holds a special place in the hearts of Jasmine,15, and 20-year-old Rebecca – a third year University of Aberdeen medical student with ambitions of working in hospital paediatrics or obstetrics.
Rebecca, who raised £1600 for Robin House by climbing Ben Nevis with two friends, will be home in Symington for Christmas, where Cameron – who lies in Biggar Cemetery – is, and always will be, part of the family.
“There are pictures of Cameron all around the house. Kenzie knows he has a big brother who just wasn’t very well. He will say: ‘My big brother, Cameron is in heaven,” explained 48-year-old Debbie, who gave up a demanding career with HMRC to become a community care worker for people living at home with dementia – a job she loves, and one that gives her the flexibility to drop everything should Kenzie need her.
“Health-wise, Kenzie is in an amazing place and he hasn’t needed a transfusion for 33 months.
“We don’t know what tomorrow brings, and it’s still very much a day at a time. If I have a good day, I take it – and I worry about tomorrow, tomorrow.”
Because her sons have different dads, Debbie has come to realise she is the carrier of the faulty gene, which doctors still cannot find – despite periodically testing Cameron’s DNA, which they still hold in a lab in Glasgow.
And until they find it, Rebecca and Jasmine will go untested.
Debbie added: “I never thought I’d be back at Yorkhill and I never thought I’d be back at Robin House. Not in that capacity, anyway – not to get respite for my son, again.
“CHAS is such an amazing charity that gives a lifeline to so many families with poorly or terminally ill children.
“It is not until you are in that position that you realise just how important it is, not just for the child, but the whole family.
“I always come away from Robin House feeling lucky – because I always think there is someone worse off than me.”
Follow CHAS on Twitter and Instagram: @supportchas, or like it on Facebook: https://www. facebook.com/supportchas.
For details about CHAS’S Christmas appeal, visit: https:// www.chas.org.uk/news-articles/ help-dying-children-and-theirfamilies-this-christmas-1
He had squared up to death so many times and said: ‘It is not my time.’ Cameron was such a loving little boy. He was full of mischief, but a gentle, placid child. He loved cuddles and just loved being with people
CHAS gives a lifeline to families with teminally ill or poorly children