The 26 miles will take around eight hours and a finish at Stormont

The 26 miles will take around eight hours and a finish at Stormont

25 March 2015

WITH Michaela Hollywood you come to expect the unexpected. But doing a marathon — in a wheelchair, with all the demands that spinal muscular atrophy imposes on her body is another matter altogether.

She also wants a host of celebrities and politicians walking with her on her 26 mile fundraising mission to Stormont, and some, such as Olympic medal winning boxer Paddy Barnes and Naomi Long MP, have already put their names down.

The feisty 24-year-old knows she is pushing boundaries with her latest venture on June 21, but her answer to the doubters is always the same — ‘Why not?’

Why not indeed. Because the rare genetic condition — which claimed the life of her sister Martina at the age of 14 — has never stopped Michaela before.

Currently a postgraduate student at the University of Ulster she graduated with a first class honours degree in public relations last year and hopes to use her skills in the field of political lobbying.

A prominent campaigner for the rights of young disabled people, she founded Trailblazers in Northern Ireland so that young disabled people could have a voice, fought with the Equality Commission’s help to study what she wanted at school, just like everyone else, and fully intends on having a fulfilling career.

She may depend on a range of equipment to keep her alive — feeding tubes, cough assist machines, ventilators — as well as her devoted family, but for Michaela this is just part of life.

Showing off her new state-of-the-art wheelchair — the aptly named Quantum Pro Sport — she happily spins and elevates in a demo, explaining how she will cope with the 26.2 miles now dubbed ‘Michaela’s Marathon’.

“The tyres are solid and puncture proof which is good,” said Michaela. “Obviously I have to practice going over different terrains.

“I’m not really used to driving it and I did nearly crash into a wall. It is very sensitive.

“I’ve timed it, and I can do about three miles an hour. But I will need a second set of batteries put in  during the marathon and a hoist while I dangle for a few minutes in mid air.”

She has a shopping list of people she would quite like to join her for a mile — stretching all the way to A-list actor James McAvoy, who played the colourful Rory who has muscular dystrophy in the film Inside I’m Dancing.

“I always say, you can only ask,” she said.

A route is still to be confirmed but the PSNI are on board. Now Michaela wants as many people as possible, celebs or otherwise, to meet her en route or for her final mile up the hill at Stormont. Through sponsorship she will be fundraising for Muscular Dystrophy UK on behalf of the 2000 people in Northern Ireland with a muscle wasting condition. 

Ultimately Michaela, who has personal experience of hospital visits with a lack of specialist care, hopes to see a specialist unit for adults with neuromuscular conditions here.

“Those 26 miles will take the most of eight hours, with a 5pm finish beginning at the bottom of the hill at Stormont,” she said. “I want everyone to meet me there, and we will go up that hill together. 

“I will not be able to do this alone.

“Each mile along the route will be in memory or honour of someone committed to fighting neuromuscular conditions. I think it goes without saying that my sister, Martina, is the first one I can announce as someone I will be remembering.

“Neuromuscular conditions are individually rare. But so much of what we face every day is a marathon. We might have different names and different paths, but we all need the same things. We need support .

“Support is vital, and I can think of nobody who has supported our family more than Muscular Dystrophy UK.”

Michaela, while devoted to her older sister’s memory, has little memory of her and doesn’t feel defined by Martina’s tragic early death.

“I remember bits but not much,” she said. “I remember torturing her. 

“Medicine has understandably advanced and I have had better access to medical equipment than my sister. She did not have the life support machine.”

Michaela also spoke of the importance of a positive attitude when living with a condition such as hers.

“It’s all mental,” she said. “It’s also different if you are born with a condition.

“I have a happy life. I am not disabled by my illness.”

Refusing to be defined by her condition, or to take no for an answer, has also brought Michaela some other good news. Her recent campaign for an electricity generator, which she needs to keep her life support machine running in the event of a power cut, is bearing fruit.

The machine breathes for Michaela when she is tired and she is not allowed to sleep without it. During recent snow storms, with no electricity for three days, she was left too frightened to sleep in case she didn’t wake up.

It now turns out that a part of the benefits system didn’t have Michaela registered as disabled and a grant is now available from the Department of Social Development, which will cover most of the cost. Her family now hope to raise a remaining £1,000.

To follow Michaela’s marathon efforts follow her on twitter @KylaHollywood or her blog Life with Hollywood. To sponsor her marathon donate at https://www.justgiving.comMoveMilesForMichaelasMuscles