Fundraiser launched for Edinburgh toddler battling rare disease as parents look for life-changing treatments

Blake Boath was two-years-old when he was diagnosed with Duchenne Muscular Dystrophy, a terminal disease that affects the body including the heart, lungs and brain.

Blake’s parents, whose lives were ‘turned upside down’ in August 2022, have researched the rare disease that affects one in every 5,000 people, speaking with doctors around the world to find treatments that will help give their son ‘the longest and happiest life that they can’.

Blake with his dad Sean with friend Max Hamilton after he completed his Seven Hills of Edinburgh Challenge | Submitted

Family friends have now launched a GoFundMe page and organised several fundraising events to help pay for expensive treatments available overseas, with proceeds also being donated to the UK’s leading charity for the disease, Duchenne UK.

Blake’s dad, Sean Boath said: “No matter what, for the rest of our days, we're going to try and raise awareness about this disease. We were young parents when Blake was diagnosed, and to go into a doctor's office and get told that your child has a life changing disease, it's scary and very hard to deal with. It didn’t feel real.

“We had 100 questions in our heads but we couldn’t ask because we were so upset. People who are going through the same circumstances need to know what’s out there for them to help and support them because there is a lot out there.”

Blake’s GoFundMe page explains that although ‘there is no cure for Duchenne Muscular Dystrophy there are a lot of treatments out there that can prolong the effects of the disease’ adding that ‘Blake will most likely be wheelchair bound by the ages of 8-12 and a life expectancy of late teens/early 20s’.

Blake, who is now four and a half has had regular physio sessions in recent and is due start school next summer. And his dad said it is incredible how well his son has coped with the disease and ‘taken everything in his stride’.

Sean said: “He is the happiest, most outgoing little boy who is always smiling and it’s incredible how well he's taken everything, from hospital appointments, to the splints he has to wear at night - he's smashing it.

“And that's why I think we've got so many people around us doing these fundraisers, because anyone that has met him knows how happy and brave he is.

“We try to keep everything as normal as we can and do everything with him to give him the best experiences we can in life. But there are times that we worry and have to hold back from things. And the scary part is, because it’s a muscle deteriorating disease, things will get worse as Blake gets older, the disease will come with more vengeance.”

Members of Blake’s family have taken part in various fundraising events, walking the Three Peaks Challenge in 24 hours, the Kilt Walk, and in the recent weeks, family friend Max Hamilton ran the seven hills of Edinburgh in 77 hours.

Sean said children in the UK with the rare disease usually start steroid treatments between the age of five and six - but due to various side effects that come from using the medication, Blake’s family are exploring alternative treatments.

The 29-year-old said: “Once you start a course of steroids that’s you on them for a while, and this medication comes with so many side effects, from behavioural changes to gaining weight, and that would have an impact of Blake’s walking.

“The NHS has a lot of treatment, but the likes of Dubai and America has a lot more treatments approved. We're still at that early stage where we're having to think about what choice we're going to make, but we still have some time, until he's about six at the latest, until Blake would need to start the treatment.

“Hopefully in the next few months we'll have a clearer idea of what future treatments we can get for Blake. If we do have to go abroad, you know, we’re talking tens of thousands of pounds. If we end up going through the NHS, all proceeds are going straight to Duchenne UK to help their research, because there's just not enough out there about this.”

You can donate to Blake’s fundraiser by visiting the GoFundMe website.