‘Inspirational’ Derry teen to walk 2.7miles in aid of Action Duchenne

Niall was diagnosed with a rare, life=limiting illness called Duchenne Muscular Dystrophy (DMD) when he was just a baby. DMD is a genetic disease that primarily affects boys and causes progressive muscle degeneration and weakness.

Niall’s mum Deborah said: “My whole world was turned upside down when we got Niall’s diagnosis. A year later, myself and my husband Kevin decided we needed to shake ourselves and do something. So, we started fundraising. I’ve been fundraising ever since for a charity in London called Action Duchenne. I’ve thrown my whole life and soul into that charity. I haven’t stopped and I haven’t wanted any recognition for it because I’m doing it for Niall and the other children with Duchenne. Duchenne is 100% fatal. A the minute, there is no cure but every penny that we raise goes directly into research for Niall’s condition in the hope that, one day, they’ll find a cure.”

Deborah is in awe of her son and everything he has achieved so far. She says he never lets anything hold him back and has such a positive outlook on life. Even when he had to wake up at 3am to go to Newcastle-Upon-Tyne for treatment, Deborah says he never once complained.

She said: “Niall goes to mainstream school and he doesn’t use his wheelchair there, even though the advice of the doctors is to take it and use it when he needs a rest. He’s so proud, he just keeps battering on. He struggles to get up stairs, coming down isn’t so hard but he struggles to get in and out of the car too.”

Kevin has completed numerous marathons to raise money and awareness for Duchenne while Deborah does the fundraising. They were both surprised to come home one day to hear Niall’s fundraising idea.

Deborah said: “Myself and Kevin went out one night and when we came back, Niall had it up on his Instagram page that he was going to do a 2.7 mile walk. We were told that Niall would be in a wheelchair by the time he was eight and that he would never be on his feet, so I was so worried that he wouldn’t be able to do it but he is so determined. This walk would take an average 15 year old boy about 40 minutes. This could take Niall three hours. He will have to stop and take a break every five minutes or so to sit down. He couldn’t do it all in one go but he really wants to do it. It’s going to be an emotional day but we’ll be beside him every step of the way and I can’t wait to see him cross the finish line.”

Niall is a massive Derry City Football fan and he loves Man United. He was ‘delighted’ to receive a message from Derry footballer James McClean in support of his walk. He also loves youtube.

“I want to get the word out there and have as many people as possible out on the Bay Road and along the quay to support Niall,” said Deborah. “As well as raising money, my biggest aim is to raise awareness of children with Duchenne. People are not aware of DMD, as it only affects one in every 2,500 boys. I only know a handful of people between here and Belfast who have or had children with Duchenne. It is life limiting, their life expectancy is between 19 and 20. I don’t look at that any more because a bit of my heart breaks every day. I just try to live in the now. Niall is such an inspiration to me. He is so funny and he’s the life and soul of this house. He keeps us all going. He’s just fantastic. The way he looks at his condition is just inspirational. He was on the Mark Patterson Show on BBC Radio Foyle yesterday and he gave a message, which was the first time he opened up and talked about his condition. He said, “If you’ve got a condition” - he didn’t say his condition, just any condition - “don’t let it hold you back. My mammy always told me I can do and achieve whatever I want and I’m going to do this walk.” My heart was breaking. Niall is just amazing.”

Niall will start walking from the Bay Road pitches at 10am on Saturday, August 13 and everyone is encouraged to support him along the route.

Donate to Niall’s fundraiser here.