Natalie and Mark Winter were told in September their son Cameron has Duchenne Muscular Dystrophy.
Cameron with his mum and dad and sister Jessica(Image: Contributed)
A Shotts mum will head a 45-strong group taking part in this weekend’s Glasgow Kiltwalk to raise money for her four-year-old son who was recently diagnosed with a serious genetic condition.
Natalie and Mark Winter were told in September last year that their son Cameron has Duchenne Muscular Dystrophy (DMD), a rare condition which worsens over time, leading to weakness and wasting away of the body’s muscles.
Given the diagnosis at the age of three, Cameron is one of the youngest people in Scotland with the muscle-wasting disease that ultimately leads to disability and a shorter life span.
Currently, the life expectancy of someone with DMD is around 30 years.
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The youngster gets physio every night and wears splints to bed. He is set to start school this year and at the moment is thriving in every way. He has reached every expected milestone but his mum and dad know that will change.
Cameron is currently part of a clinical trial accessing Givinostat in Newcastle, a life-prolonging medication for a very rare disease. He is one of very few boys in the world, and possibly the only one in the UK involved in the trial.
His parents want to raise awareness of the condition and let other families know that there is hope for children with DMD.
Four-year-old Cameron Winter(Image: Contributed)
Mum Natalie, a school teacher at Larkhall Academy, said: “Cameron started nursery in January last year and it was them that picked up on it. He was a wee bit clumsy on his feet and was walking on his toes, and wasn’t keen on walking a staircase. He only leads with one leg and only does one stair at a time. He spends a lot of time with his papa, my dad is his best pal, and we just thought he was mimicking him because he was with him all the time.
Cameron pictured on a visit to the hospital(Image: Contributed)
“The health visitor came out the same week and referred him to physio and thought he had weak ankles but wanted a second opinion. They went out to the nursery and agreed with the nursery teachers and decided they would look into it further. The following week we got a diagnosis after a blood test. It was a devastating time but we’re positive and hopeful.
Cameron, who loves superheroes, with dad Mark(Image: Contributed)
“Cameron is a massive superheroes fan and calls them his special muscles. Every time he goes for blood tests he asks if it’s going green, he thinks he’s like the Hulk.”
Natalie and Mark were told by specialists that the prognosis for young people with DMD is much more positive now compared to a decade or so ago. There are groundbreaking research trials for treatment and gene therapy but that can come at a huge cost.
Duchenne’s can either be passed to a child through its mother or by spontaneous mutation. Natalie, who also has one-year-old daughter Jessica, was relieved to find out that she is not a carrier.
Mark and Natalie are determined to do all they can to ensure Cameron has a full and happy life ahead of him(Image: Contributed)
A GoFundMe page was set up and Natalie decided to take part in the Kiltwalk’s 23-mile Mighty Stride. A total of 45 are leaving from The Marbles Club, Shotts, on Sunday at 8.30am and amongst the others Natalie will be joined by include her school’s depute and three other colleagues, Cameron’s gran and other relatives, a group of mums from his nursery, and others who’ve picked up on his story.
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They will be returning home to Shotts around 7.30pm and will be welcomed by The Wee Shotts Piper and Cameron who will be giving out thank you bags filled with Scottish goodies.
Natalie added: “There are some ground breaking research trials going on for Duchenne but like anything, it costs money. Gene therapy is available in America but it costs £3million. If you can get a clinical trial then you only have to cover the other cost such as travel and accommodation.
Cameron was diagnosed with DMD in September last year, aged three(Image: Contributed)
“We are unsure what lies ahead for Cameron but we do need money now so that if we need to travel to London or America to see Duchenne specialists, we don’t have to wait about.
“He’s going to need a wheelchair, as by mid to late teens he will be fully dependent on that, and we live in an up and downstairs house so we’ll need to convert our garage into a downstairs room for him, because he won’t manage stairs.
“We are really up against it but you’d do anything for your kids.
Cameron loves the Hulk(Image: Contributed)
“In September we were given the number for Great Ormond Street and phoned that day but Cameron will be too old for the trial as he will be five by then, and you need to be three or four years old.
“Life has been completely turned upside down for us. The thing that we’re fighting for is for Cameron to live a happy life and gets chances like everyone else.”
The fundraiser has already raised almost £15,000. You can donate at: https://www.gofundme.com/f/kdrumr-camerons-journey
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