Young NI woman wants to give terminally ill brother back his independence

Ethan McClean is a huge fan of the Belfast Giants, whose coach Adam Keefe has kept in touch with the 12-year-old during lockdown

Ethan McClean, 12, has Duchenne Muscular Dystrophy – a terminal muscle wasting condition with a life expectancy of mid to late teens.

During lockdown the Belfast Giants fan has barely left his Ballymena home and has lost the mobility in the lower half of his body.

His sister Amie, 22, has begun fundraising for an all-terrain wheelchair which will allow him to get himself around without always having to rely on his family.

Amie said her brother his lost all mobility in the lower half of his body during lockdown

Amie said: “His only option of doing normal things like a walk on the beach or going on the forest trails requires his manual wheelchair where myself, my mum or dad have to push him. For Ethan who, this year, enters his teenager years, this loss of independence leaves him feeling like a burden on us.

“I want to change this for him and purchase him an all-terrain wheelchair that will allow him to independently join his friends and family on walks without feeling like a burden on anyone.”

Ethan goes to Slemish College though is yet to return to school. Amie said: “I think whenever he goes back that’s when the loss of independence will hit him harder.”

The chair will cost in the region of £18,000 and since the beginning of the month when she started doing 5K a day, Amie and her friends have been able to raise close to £3,500 towards this target.

Amie and Ethan are familiar faces with ice hockey fans around the UK

On May 15 Amie is going to walk from her home in Ballymena to the SSE arena in Belfast, a distance of around 30 miles using back roads.

The family live in Dunfane Park – Ethan, Amie and their mum and dad. All four of them are big fans of the Belfast Giants, watching them play home and away throughout the UK before lockdown.

Amie said: “Ethan has got well in with the Belfast Giants head coach Adam Keefe, he keeps him in line. During lockdown Adam kept in touch with Ethan, he did video calls and things like that.”

Ethan was diagnosed with Duchenne Muscular Dystrophy at 18 months.

Amie and Ethan cheering on the Belfast Giants

“He got from crawling to walking but once he got to walking it went back downhill,” said Amie.

“He’d been spending more and more time in the wheelchair up until lockdown when he lost all mobility in the lower half of his body.”

With her brother having a life expectancy of mid to late teens, Amie said: “One day you could be sitting thinking about it and then you realise you just have to get on with day-to-day life, try and make the best of every day.”

You can find Amie’s page on Go Fund Me called ‘Wheely Great Adventures for Ethan’.

Amie has also set up pages on Facebook, Instagram and Twitter.

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