Campaigner in fight for herself

Campaigner in fight for herself

12 February 2014

A PROMINENT campaigner for the rights of young disabled people is fighting her own battle for a piece of vital lifesaving equipment.

Michaela Hollywood, who has spinal muscular atrophy, says her Crossgar home urgently needs an electricity generator to keep her life support machine running in the event of a power cut.

During last March’s snow storms Michaela was left dangerously housebound with no electricity for three days, but with the Department of Health indicating it can’t fund a £5,500 generator, Michaela has been told to phone an ambulance if it happens again.

The 23 year-old is living with a rare genetic condition that tragically claimed the life of her own sister Martina when she was just 14.

Causing muscle weakness and progressive loss of movement, most of Michaela’s care takes place at home, where she depends on feeding tubes, a ventilator, wheelchair, suction machine and air filled mattress, all of which use electricity.

Referring to last March’s snow storms, Michaela said she was faced with the impossible task of trying to avoid sleep for three days.

“It breathes for me if I am tired,” said Michaela of her life support machine. “I am not allowed to sleep without it. My life support machine being off leaves me at great risk.”

Recalling how her parents were heating towels on a cooker in a bid to keep her warm during the extreme weather, Michaela said they have already spent £1,400 over the past year on electricity alone.

“All my disability living allowance, all my benefits go straight to my mum and dad,” she said.

“Due to health and safety carers won’t come in when there is no electricity and mum and dad won’t be here forever.”

Despite the simplest everyday tasks being challenging, the bright and cheerful 23 year-old tries to conduct as normal a life as possible as a PR student at the University of Ulster.

Over recent years she has been at the forefront of the Muscular Dystrophy Campaign’s pressure to secure service improvements in Northern Ireland. She was also a founder member of the Muscular Dystrophy Campaign’s Trailblazers young campaigners network.

Michaela’s dad, Michael Hollywood, said they had been advised to take her to Thompson House in Lisburn in the event of a power cut, but that he did not fancy their chances of an ambulance taking an unwell Michaela to Lisburn in a snow storm.

“We would be putting her into an environment where people are sick, which we have to avoid,” he said. “I don’t think Thompson House would be geared to keep her. Two visits to their ward would pay for a generator.”

Mr. Hollywood has had a series of heart attacks in recent years and his wife Marie needs spinal surgery. Both are in their sixties.

“It does not get any easier,” he said. “I take her everywhere. Not everyone understands her condition.”

South Down SDLP MLA Seán Rogers said he was “disgusted” Michaela had been left in this “frightening situation”. He and party colleague councillor Maria McCarthy have both called on Health Minister Edwin Poots to provide a generator.

Mr. Rogers said: “I have been lobbying both the Department of Health and Department of Social Development on Michaela’s behalf but now feel that the Minister needs to intervene.”

Councillor McCarthy said it was abundantly clear that an exceptional case needed to be made for Michaela.

“Michaela and her family are hardworking, genuine people,” she said.

“To say Michaela is an inspiration is an understatement. She is a remarkable, accomplished young woman who rarely asks for help, but in this case, her future well-being and that of her family gravely depends upon it.”

The Department of Health had not responded by the time we went to press.