We wanted to raise awareness of a very serious, degenerative condition called Friedrich’s Ataxia.
At DHU Healthcare, our colleagues have been sharing some very personal experiences and that encouraged Sue, one of our 111 Health Advisor Coaches in Oldbury, West Midlands, to tell us the heartbreaking yet inspirational story of her son, Jamie.
Jamie, was born with this rare, genetic condition that attacks the muscles from the feet up. Jamie sadly died 17 years ago at the age of 21 but his attitude to this condition made Sue stronger and changed her approach to life.
In Sue’s words…
“I split up with Jamie’s Dad six months after he was born so he wasn’t there when Jamie was first diagnosed. The tests weren’t in relation to anything specific; it was during his two-and-a-half-year check-up and I was concerned that he wasn’t walking properly. He kept falling over and stumbling as if he was drunk. The clinician said it would clear up, but I knew it was more than that and wanted a second opinion. I took him to Birmingham Children’s Hospital where they put electrodes on his body and found there was a problem with his nerves and muscles.
“They wanted to test his Dad and I had genetic counselling which was when they discovered I carried the gene. It was my motherly instinct that something wasn’t right, he had Friedrich’s Ataxia.
“By the time he was five he had gone through a number of operations, the bones in his feet were fused. It’s degenerative but it works its way up from the feet, by the time he was 11 he was off his legs and needed a wheelchair. It was very difficult for him at school, I wanted him to go to a specialist school but he went to a standard one, I had to fight for everything for him and it made me stronger.
“As Jamie’s condition got worse he went to college, but it didn’t work out for him and he wanted to come home so I looked after him. It was around that time that this condition began affecting his spine and he needed more operations to insert titanium rods into his back. He could only use half of his lung capacity by this stage but he was determined to do two more things, find and meet his Dad and go back to college.
“He made me the person I am today…”
“He managed to do both, me met his Dad and started seeing him, he also went back to college and passed his exams, he was a bright lad, and then, that August in 2006, we lost him. I was 23 years old when I had him, I feel that I was meant to have him, he made me the person I am today but at that moment, my whole life fell apart. We were devastated but I loved him and have such memories of what an incredible boy he was.
“I remember when he was in hospital, waiting for his spine operation, he saw a young boy on a drip with Leukaemia. He turned to me and said, “I’m not that bad am I Mum”. He always had such a positive outlook, never let himself get down and always thought there were people worse off than him. In the face of such struggle and difficulty, that’s inspiring to me, he was always just pleased to be here.
“He was so brave, he fought for 18 years after he was diagnosed and had so many operations and setbacks. He always said that when it reached his hands, that’s when he’d had enough. He used to love playing on his Xbox and Playstation with his sister Nadine and brother Kieran when he was older, so losing that ability was so hard. They were just nine and ten years old when Jamie passed and it was so tough for them, but we talk about Jamie often and always do something in his memory for birthday and anniversary, he means a lot to them. You never expect to lose your kids but knowing that you don’t have long from the start makes every moment precious.
“I’m now raising money for Ataxia UK whenever I can, who help raise awareness of the condition, help fund research for treatment and support people who have it and their families. We’ve had auctions, my niece has done a parachute jump and I always donate on the anniversary of his death. It’s such a worthy cause and helps families and individuals just like us and Jamie through the difficult times so that we can enjoy what we have together.”
We have set up a JustGiving page for those of you who would like to support Sue’s campaign, you can donate to it by clicking here. If you’d like to know more about Ataxia UK and how they help families like Sue’s you can visit their page by clicking here.
Publish date: 10 August 2023