A Derry woman has said she is determined to raise awareness of a rare genetic disorder which has claimed the life of her father and a number of other family members.
Vicky Keenan from the city’s Waterside became a carer for her father Ian in 2009 when he first started displaying symptoms of the progressive neurodegenerative disorder Melas Syndrome. The little known illness gradually attacks the brain causing stroke like symptoms and seizures.
Aged just 13 when her father fell seriously ill, Vicky didn’t hesitate when it came to looking after him. The father and daughter had spent their entire lives together in their family home.
“It was always just me and my dad,” says Vicky. “We were always used to it being just the two of us and I wanted to care for him myself.”
With the support of family members and medical staff at Altnagelvin, Vicky cared as best she could for her dad Ian, until she was able to do no more.
“I was coming into the last year of my A-levels and in the end I had to drop out of school because I was so worried about him.
He eventually died in his sleep two years ago and I found him dead in his bed. He weighed just six stone.Vicky Keenan
“I just couldn’t settle at school because I’d always be wondering if he was ok. I had great support from my uncle Jim but I just wanted to spend so much time with my dad.
“He was an amazing man who would have done anything for anyone.
“He was 47 when he passed away and had spent six months on and off in the Stroke Ward at Altnagelvin. The staff in that ward were so good to him and that’s really why I want to give something back to them.
“At one point I remember the nurses even brought him in a bacon bap, which he loved! They were just so kind. They were the loveliest people. They made the toughest months of my dad’s life a bit easier and I’ll never forget that.
“I think it’s time now that I said ‘thank you’, and in the process let people know a little more about Melas Syndrome. I lost my grandmother and two uncles to the illness and I have an uncle fighting it at the moment.”
The distinguishing feature in MELAS syndrome is the recurrence of stroke-like episodes. The disease attacks the brain.
Towards the end of his life, Ian Keenan suffered from so many seizures that he had to be hospitalised and was on a major combination of drugs to help suppress his symptoms.
“For as long as I can remember my dad had multiple health problems ranging from brittle bones to hernias but towards the end he just got weaker and weaker,” says Vicky.
“He eventually died in his sleep two years ago and I found him dead in his bed.”
“At the end of his life the disease had attacked him so much that he weighed just six stone.
“There is no cure for Melas and there is very little research. The illness is often misdiagnosed too as my father was on many occasions. It affected my father and his brothers in a number of different ways.
“I have an uncle who is currently battling the disease and I’m hoping that the money I raise will be used to fund research so that it might be possible, eventually, to get some kind of treatment for the illness.”
Vicky says her father was well known and well thought of across the entire community.
“Everybody knew him, and everybody who knew him had only good things to say about him,” she recalls.
Vicky now lives in the family home in Nelson Drive and has gone back into education after having taken time out of school to look after her father.
“I’m back in college studying natural sciences and trying gradually to find my way back into education.
“I think I get my love of the outdoors from my dad. He lived in the city but he was a real country man at heart. He always wanted to be outside and loved working with animals.
“I want to honour him as well as I can and I think that by talking about what he went through I can do that. And also by helping raise money for those people who helped him when he needed it most.”
To support Vicky, visit her online fundraising site https://www.gofundme.com/Melassndyrome