Royal Marines raising money for military child with incurable genetic condition
More than 100 Royal Marines are taking part in an epic fundraiser so a fellow commando can fund medical treatment for his young son whose rare genetic condition has left him with a shortened life expectancy.
Corporal Andy MacRae, of Armoured Support Group Royal Marines, Commando Logistic Regiment, and his partner Hannah became parents to Cameron in August 2022.
Just five months later, in January 2023, their son was diagnosed with a form of leukodystrophy.
The genetic disorder primarily affects the central nervous system, can cause progressive neurodegeneration and is largely untreatable.
Specifically, Cameron has been diagnosed with Krabbe Disease – symptoms of which include extreme irritability, feeding difficulties, fever and seizures. Those affected with the disease rarely live past the age of two.
Speaking with Forces News about his son's condition and the fundraising, Corporal Andy MacRae said: "There's no cure, so what the plan is, what the doctors have decided what's best for Cameron is to treat his symptoms so make him more comfortable, make him less irritable.
"We've had a gastrostomy, a tube straight into his stomach so he can be fed more easily to make his life more comfortable."
Karen Harrison, a Support Service Manager for Alex – The Leukodystrophy Charity which provides support and information to people affected by leukodystrophy, said: "Krabbe affects approximately 1 in 100,000 babies, it’s difficult to put a number on it but it's a very, very rare condition.
"With Krabbe the first initial symptoms are a lot of irritability.
"We all expect babies to cry and be a bit irritable but it's extreme.
"They would probably have some swallowing difficulties, stiff limbs and cognitive problems.
"They're really very serious conditions and cause the most horrific symptoms.
"With Krabbe, the disease itself is caused by both parents having problems in their genetics, normally the parents won't show any signs or symptoms so therefore they have no idea that they carry this gene.
"It's just so difficult when you don't know that you carry something and then your child is affected."
To help cover the cost of private medical bills and other financial pressures, a group of Royal Marines are embarking on an arduous 24-hour endurance race on 'The Rollercoaster', a southwest coastal path near Durdle Door on 27 July.
Organiser Corporal Michael Dowd of Armoured Support Group Royal Marines said: "A little fundraiser, an idea between some of the lads, has now turned out to be a big fundraising event now to help support the medical bills for the family.
"With the Royal Marines ethos, the brotherhood, the way we stick together, if anyone is suffering, we can all stand next to each other and get round them and help them out as much as possible."
Those involved in the challenge will be split into two syndicates and will run a loop along the coast and back in a relay for 24 hours.
The fundraising campaign has already reached more than the original target of £15,000, which has delighted Cameron's parents.
Cpl MacRae said: "It's amazing, it's so overwhelming. When I first told Hannah she sort of burst into tears about it – it's so touching.
"I'll never be able to thank them enough, or repay them, it's just amazing what they're doing.
"The support has been completely overwhelming.
"I know the coast path quite well and it's challenging.
"The normal route is just kind of out and back once and these guys are just going to do it over and over for 24 hours, that's going to be a serious challenge.
"Any support that anyone can offer would be amazing. It's going to be a tough day for sure."
Royal Marines from across the country are taking part in the relay run and it's hoped more money can be raised.
Corporal MacRae and his partner Hannah do not know how much time they have left with Cameron so they hope funding this treatment will allow them to make the most of every moment with him.
If you want to donate, visit the GoFundMe page.
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