The trials, with their energising infusions, will re-start soon but in the meantime, Luke’s mum, Claire O’Hanlon, who chairs Muscular Dystrophy UK’s Northern Ireland Council and was awarded an MBE in 2019, plans to take him to see some of Ireland’s most beautiful sites – which will entail a lot of carrying. She said:
He is a lot heavier than he looks! But in the first weeks of August myself and his little brother Coen will do three peaks in three weeks, to raise £3,000 for research into Muscular Dystrophy UK so that they continue to support families like ours.
We will climb or walk up Divis Mountain to see the views over Belfast, up the Cuilcagh Boardwalk (the stairway to heaven) in beautiful Fermanagh and lastly, Slieve Donard in the heart of the Mournes.
Luke will only be able to walk shorter distances on flatter parts so I will be carrying him most of the way and no doubt I’ll be carrying either Coen who is only 6, or Luke, most of the way! Considering I’m not exactly what you would call fit, this is a massive challenge but I can’t wait to share the beautiful views and that quality time with them.
She said that if you have ever stood at the top of a mountain and looked in awe at what lies below you will know that it’s something everyone should see.
Those of you who have followed us for a while will know that my 9 year old son, Luke, was diagnosed with Duchenne Muscular Dystrophy when he was 13 months old. The same condition that I watched take the life from my brother, Mark, when he was just 16 years old. You’ll also know that Luke is an absolute super hero who travelled to Newcastle, England every single week for 88 weeks to take part on a trial for ‘other boys with poorly muscles’ (his words! It was obviously for him too but that’s how selfless he is – he thought he was doing it for others).
When Luke was diagnosed, I made 2 promises – 1 was to do all I could to try to change what having Duchenne would mean for him and the second was to make sure that Luke enjoyed as many life experiences as possible. For the most part, I’ve been keeping those promises and for a 9 year old with Duchenne Luke has been wonderful.
Regional manager for Muscular Dystrophy UK in Scotland, Dean Widd said:
After knowing Clare and Luke for many years, I am always touched at the continued and determined efforts shown in helping raise vital funds and awareness for MDUK into Duchenne muscular dystrophy. This recent challenge will certainly be testing to Clare, Luke and Coen while also rewarding when reaching the summit, taking in the views, knowing they are helping make every day count. I am sure they will conquer moving mountains for muscles over the forthcoming weeks and I wish them all the very best of luck.
Claire would love it if people could support them by sponsoring them – or if people prefer to do the challenge as well on their own dates then email Regional Fundraising Manager Julia Poulton on j.poulton@musculardystrophyuk.org.
pic caption: Left to right. Luke, Claire, Coen