Mum and kids battling life-altering condition thankful for one of their best years

Mum and kids battling life-altering condition thankful for one of their best years
Evie with her husband Martin

A mum and her two children who are battling an illness that is consuming their lives for several years are so thankful for one of the best years of their lives.

Evie Nevin, 31, her son Alexander, 9, and three-year-old daughter Olivia are living their lives with the rare and debilitating Hypermobile Ehlers Danlos Syndrome (EDS).

EDS is a connective tissue disorder, which causes the body to produce faulty collagen and are susceptible to joint dislocations, chronic pain and fatigue. Collagen is the "glue" that holds our bodies together.

Although the syndrome is slowly becoming more widely known here in Ireland, there are still no specialists or facilities in the country to help people with this condition, and there is no cure. Evie travels to London for specialist care, which she finances through fundraising.

Evie, from Clonakilty, Co Cork, is very prone to hip dislocations on almost a weekly basis. She is extremely affected by changes to pressure and can be bed ridden with pain from something as small as a rain shower. Her children Alex (9) and Olivia (3) are also affected by the condition. Olivia has dislocated her elbow on a number of occasions while Alex is more affected by sensory issues and has many difficulties in school.

The family had even considered moving abroad so they could access vital multi-disciplinary care.

Due to her desire to raise the profile of people trying to live and work with disabilities, Evie has decided to run in the local elections next summer for the Social Democrats.

“We’ve had a really good year and I’m learning to cope with my and my children’s illness," she said. "As a result, thankfully, there haven’t been any trips to the hospital A&E.

"My hips are still very problematic but I’ve learned to deal with it a bit better this year, especially with the use of mobility aids. Alex hasn’t had many injuries. Olivia has dislocated her elbow on two or three occasions now, but was able to pop it back in to place herself.

“Olivia, makes very little of what happens to her now, which is both relieving to know she is coping with her health but so sad to that a little girl is having to deal with a life-altering situation.

“Olivia is also taking part in ballet which is good to build up her muscles as my husband Martin and I were told it may help her deal with EDS as long as she isn’t overextending her joints too much.

“As for myself because I now have an electric wheelchair which is such a massive deal for me to have, I’m able to get around so much easier, and I’m not tiring myself out too quickly.

“I’m also listening to my body a lot more and taking rests when I need them. Obviously all of us will always have these health concerns and having to deal with hospital consultants but energy levels are improving once we manage ourselves better.

“I was diagnosed five years ago with EDS but it’s only now I’ve accepted what’s happened to me. I changed from being an outgoing person to being afraid to do anything. I had all these work skills as a journalist but ended up losing my confidence.

“But now, I’m grabbing everything that comes my way with both hands and I’m not turning down anything because I’m afraid of it. That was my new year’s resolution last Christmas and I plan to bring that into 2019 with me as well.

“I know now I can deal with and cope with the year ahead and that’s why I want to highlight and show people that people with disabilities can bring a fresh new perspective to the table.

I feel we are seen as an afterthought. People in all walks of life want change and want inclusivity.

“If someone had told me two years ago that I would be running for election, standing up in front of thousands of people at marches, I would have told them there was no chance of that. There is so much frustration experienced by people with disabilities when dealing with our society as a whole.

“Those with disabilities feel as if they are being dismissed in so many walks of life and that they don’t really have enough political representation, especially for women. In the West Cork area alone, there are 11,000 people with disabilities. Nationally it stands at 13%.

“Despite the numbers nationally, I feel we are seen as an afterthought. People in all walks of life want change and want inclusivity. Just because we have a disability doesn’t mean we can’t contribute to the economy and society on so many different levels.

“I’m so thankful to the team behind me wanting to help with my campaign. My Dad, husband Martin, one of my campaign managers Elaine O’Connell and the children have especially been 100% behind me in what I want to achieve. I want 2019 to be even better than this year.”

Martin was named Cork Carer of the Year last year. He said home life could be tough and stressful at times, but he did his best to do what was expected of a father, husband, and carer.


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