Debbie Ramage and her family have received support from the charity for the past 16 years.
A family from South Lanarkshire is backing a spring campaign launched by Children’s Hospices Across Scotland (CHAS) to help dying children across Scotland as the charity marks its 30th anniversary.
Debbie Ramage, 48, from Symington, has been supported by the national hospice charity for the past 16 years as a result of both her sons being diagnosed with the same rare, inherited condition, Hoyeraal Hreidarsson Syndrome (HHS).
Debbie’s first son, Cameron Glasgow, was born four weeks prematurely on January 20 2004, weighing just 3lbs 13oz.
The tiny tot spent three weeks in Wishaw General Hospital’s neonatal unit before getting the all clear to go home.
Unfortunately, after his third set of immunisations Cameron began to have convulsions and hospital tests led to Cameron’s diagnosis of HHS.
Because the condition affects the bone marrow, heart and lungs Cameron needed additional oxygen support and blood and platelet transfusions in hospital up to three times a week.
The youngster also suffered from pulmonary hypertension – a type of high blood pressure that affects the lungs, arteries and right side of the heart.
Community care worker Debbie said: “My poor baby couldn’t see or walk or talk, but he was as determined as could be. He had such a happy wee smile and could crawl like the clappers. He had 30 to 40ft of oxygen tubing attached to him which allowed him to go anywhere he wanted which he did!”
When the family were referred to Robin House in Balloch, Debbie admits she was apprehensive at first.
“You hear the word ‘hospice’ and you think of sadness and death but the minute you walk through the door, those thoughts are totally reversed. There’s laughter, kids running about, and just so much happiness.
“Going there meant our troubles left us for a wee while and helped us regain our strength and recharge our batteries. Cameron in particular enjoyed all the attention he got from the staff and all the love and cuddles they gave him. He particularly loved the sensory room and the hydrotherapy pool.”
“So many times we almost lost him but he was a wee fighter. One time when he was really ill the staff at the hospice nominated him to meet Ewan McGregor who visited him personally and read The Gruffalo to him. It was a special moment and one we will treasure forever. Ewan was touched to meet Cameron too and even sent him a special get well card when he came out of intensive care.”
Cameron continued to enjoy respite visits to Robin House up until the winter of 2008 when his health suddenly deteriorated.
Debbie said: “We were all devastated. We didn’t want to say goodbye but we could see his little body was tired and the ventilator was the only thing that was keeping him alive. We were heartbroken but knew we couldn’t keep him any longer and Cameron slipped away in my arms the following day - 7 May 2009.”
After Cameron’s death his parents separated and, a few years later, when Debbie was in a new relationship, she became pregnant with her second son at the age of 39.
Kenzie Ramage was born six weeks prematurely on November 3 and weighed 3lbs 13 oz - exactly the same as Cameron.
Even though he was small and jaundiced, Kenzie’s birth had been straightforward, however, as time went on Debbie noticed he could be quite slow to sit up, he could be quite “floppy” at times and had balance problems.
Tests and an MRI carried out on Kenzie in February 2015 showed he had the same blood and bone marrow abnormalities Cameron had displayed years earlier and HSS was confirmed.
Debbie said: “I couldn’t believe I was back facing the same heartache all over again.”
Despite his illness, Kenzie’s lungs and heart were strong and medical advances meant that steroids could regulate Kenzie’s counts without complications.
The brave youngster 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 and he’s never stopped running since,” said Debbie.
“His balance is not so good, but he doesn’t let that stop him. 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 now the most active, chatty wee boy you could ever meet.”
When Kenzie was referred to Robin House Debbie admits she felt emotional going back.
“I wasn’t sure she would have the strength to cope with all the memories but when we went through the door it felt like coming home.
“Everyone is always so lovely, genuine and caring. Just like his big brother, Kenzie loves everything about the place, the playroom, the soft play, the pool, the activities and art room.”
Robin House continues to hold a special place in the hearts of Cameron and Kenzie’s sisters Jasmine, 15, and 20-year-old Rebecca who recently raised £1,600 for the hospice by climbing Ben Nevis with two friends.
At the moment, Kenzie, now 9, is continuing to do well but Debbie knows his condition could change at any point.
“Life has been difficult and no doubt we have even more hard days ahead but all we can do is take one thing at a time, deal with today and I worry about tomorrow. Whatever happens it’s a great comfort to know that CHAS is always be there for my family – it just means so much.”
CHAS has been caring for Scotland’s most vulnerable children since 1992, making sure that no matter how short a family’s time together may be, it is filled with happiness and joy.
There are over 16,700 babies and children with life-shortening conditions in Scotland and CHAS is determined to reach everyone who needs its help.
Director of fundraising and communications at CHAS, Iain McAndrew, said: “Knowing your child may die before you do is the unthinkable reality that thousands of families across Scotland have to cope with every day. We are privileged to have helped Debbie’s family but we know we can’t reach everyone who needs us without the kindness and generosity of our supporters.
“Like many others, CHAS families are feeling the impact of the increase in cost of living which is an added pressure when they are already at breaking point.
“The bottom line is that too many families are facing the heartbreak of losing a child without the support that CHAS can give. We need to increase our income to reach every family in Scotland that needs us and so we’re asking the Scottish public for their help.”