A Derry man has spoken of his brother's uplifting spirit despite his struggles with a severe type of muscular dystrophy that means he can't lift his arms or legs.
Evan McMenamin, a 21 year old from the Galliagh area of the city, described to Belfast Live how his brother Travis "never lets it get him down" despite the difficulties he faces in his daily life from Duchenne muscular dystrophy.
"Travis used to be able to walk around like everybody else but, from around 10 years old, he's had to use a wheelchair," Evan said. "From around his early teens he's lost the ability to lift his arms or move his legs at all. He is 20 now and, you know, despite the incredible challenges he never lets it get him down."
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"I'm 21 and my brother is 20," the Derry man said. "He's suffered with it his entire life. He's had to overcome a lot as he's got older. We're close in age so I've always noticed, growing up, that things were more difficult for Travis - walking, using his arms, etc.
"I believe that with boys with Duchenne the life expectancy is between mid 20s and early 30s. With a lot of boys it might be a lot younger than that. The average is in and around that age."
In spite of the challenges, Evan said his little brother still manages to keep a positive outlook despite the
"He still enjoys trips to England to watch wrestling with family and friends and he tries to lead as normal a life as he can. He's big into the WWE. Travis would go to Belfast for it but we've also went to Cardiff for it, we've been to London. The main show is called Wrestlemania and he's been to that twice. He's always been into it from a young age."
He added: "With the reality of Travis' condition, he can't get a job. He can't go out socialise. A lot of the normal life things aren't really an option for Travis, so those trips away are what he's always looking forward to."
Inspired by his brother, Evan has decided to try and raise funds for and awareness of the charity Duchenne UK.
"I've seen a lot of the work that Duchenne UK are doing and I think it's incredibly important for everyone that suffers from it, including Travis," he said. "I see all this incredible work being done by the charity and I just want to play my part in helping."
He continued: "Duchenne UK is at the forefront of advancing treatments and care for everybody who is affected by this condition. I believe they do a lot of research but they're also actively campaigning for a new drug known as Givinostat. It's only available to a limited number of people but Duchenne UK is campaigning to get it made available to everyone who has the condition.
"I believe it's quite effective at slowing the progression."
An Early Access Programme has been open in the UK since November for Givinostat, as the manufacturer seeks approval for its use from drug regulators including the National Institute for Health Care Excellence (NICE) and the Medicines and Healthcare products Regulatory Agency (MHRA). If it's approved for use by NICE at a committee meeting scheduled for May this year, it should be made available through the NHS in Northern Ireland.
It's described as a "promising new medication" for Duchenne muscular dystrophy by Dr Sandya Tirupathi, a Consultant in Paediatric Neurology at the Royal Belfast Hospital for Children, in a blog post for Duchenne UK.
While it's still unclear if Evan's brother will benefit, the Derry man said it's just one example of the work being done by the charity that he's hoping to support, adding: "Anything that's good for anybody that's suffering with this condition is a good thing in my books."
Evan, who studies in Manchester, is planning to climb Mount Errigal in Co Donegal on Good Friday (April 18), and has launched a fundraiser with a £300 target in aid of Duchenne UK.
Writing on his GoFundMe page, Evan said: "I will be climbing Mt. Errigal in Donegal on Good Friday to raise money in aid of Duchenne UK and every donation will help. Duchenne muscular dystrophy (DMD) is a progressive muscle-wasting disease, impacting the lives of roughly 2500 people in the UK, including my brother Travis, who has faced it with bravery his entire life. As the leading DMD charity in the UK, Duchenne UK is at the forefront of advancing treatments and care for everyone affected by the disease to end its devastating impact."
He added: "Any donations will help Duchenne UK in its mission to bring effective treatments for this horrific disease to thousands of people like Travis across the UK, who’s lives are impacted on a daily basis."
English (United States) ·