Saturday 25 May 2019

Marie is north Dublin's 'carer of the year'

A mum's sacrifices for her special son are recognised with award

Ken Phelan

One brave and dedicated Rush mother has won a special award in recognition of her strength and unconditional love in caring for her disabled son.

Marie O'Toole Wyer from Rush, was awarded North Dublin Carer of the Year 2018 by Fingal Carers Ireland. Marie was nominated by her husband, and although she knew he was sending in an application, she soon forgot, being so wrapped up in daily turmoil.

Marie's 20-year-old son Karl, was diagnosed with Angleman Syndrome when he was one year old - a rare genetic disorder that affects the nervous system and causes severe disability. Marie has faced years of heartache during times when doctors were often unsure if her son would live.

Speaking to The Fingal Independent, Marie explains: 'When Karl was one he had uncontrollable seizures, and they had to put him into a coma. He had a stroke from the seizures and lost the power on his left side. He ended up with severe brain damage and they didn't think he'd make it. So from a very young age there were some really tough times.'

She says: 'Something had to give, so I left work to care for him full-time. Obviously as he was getting older, there were more complications, he developed severe scoliosis, chest problems, he couldn't swallow and he was getting severe pneumonia - that's to name just a few things that have happened over the years.

'We never had any help up until he was nearly eighteen. He was very sick in hospital, touch and go basically. His chest was really bad and they wouldn't do surgery to put a tube in for feeding because he was too high risk for anaesthetic. They weren't sure if he'd come around after the anaesthetic, if he would wake up.'

Marie has a nurse who calls to the house twice a week, from 11pm to 7am. As appreciated as it is, it is still little respite in what is always a challenging and exhausting week.

She says: 'Karl transferred from children's services to adult services, but it took a long time. He's gone from Temple St. to Beaumont Hospital in the last year-and-a-half or so. The transition was very difficult because it was our second home really. In Beaumont, he was constantly on antibiotics for his chest; I had to do physio at home with him every day, and he'd have it in his day centre in St. Michael's House too.'

Incredibly, Marie (41) has three other children to take care for. Of these, Ryan (15), has been diagnosed with autism and is partially blind. Marie considers herself 'very lucky' to have secured a place for Karl in St. Michael's House, although inexplicably, transport for him had been refused, despite Ryan also needing his mum at home.

Undoubtedly a very hard working and devoted mother, it's hard to see how Marie still manages to cope. But, she says there are certain times when it all seems worthwhile, when just for a moment she can simply enjoy her son:

'It's the little things that help. It could be just a good day when he's laughing, and enjoying life and that makes it all better. It could be nothing to someone else, but it's the tiny little things that me-an the most.

'Once he's comfortable and happy and not in pain, that's the main thing. He loves life, he loves people, he loves being out there socializing, he's just a really happy young man, and that makes me happy.'

Fingal Independent