Growing up I was a ‘normal’ child I live in Balbriggan in North Dublin. I am now 28 years old and live independent to my family. I have a younger brother and two older sisters. At 17 me and my oldest sister were diagnosed with a condition called Ataxia Telangiectasia. In 2012 I started using a walking frame to help get around and in 2014 I realized it was safer to use a wheelchair. Now using a wheelchair, I have more energy and do more than ever.
“When I was asked to be involved with Ataxia Foundation Ireland I said YES straight away. To know that this foundation is all for the members makes me so happy, all I have ever wanted to do is let other people with Ataxia know its not the end of the world and with this foundation I hope people realize that you can have a good and easy life even with a disability like Ataxia”.
Me, personally don’t use the word disability much because a lot of people think disability means you cant do something but I don’t believe that. If you want to do something bad enough you will”.
That’s the message I want to tell all the members. It feels strange calling them members because tir not just members. Over the years of meeting people with Ataxia we all became a family. A big family who are there for you whenever you may need them.
Hi I am David Hanly and I am 29 years old. I live in County Laois, just outside Carlow town. I was diagnosed with Freidreichs Ataxia when I was seven years old. I attended primary and secondary school in Carlow where I made many friends. After school I studied computer science and accounting briefly at Carlow IT but found I lacked an aptitude for either of these subjects. I then went to Saint Patrick’s college in Carlow and studied Humanities through their Access programme and after five years I received an honours degree in Humanities from there. I really enjoyed my time in college and received amazing support and assistance. I am a full time wheelchair user since 2006. I have travelled to New Zealand to Los Angeles and to France several times and to the UK.
“I am delighted to be part of Ataxia Foundation Ireland and hope to be able to deliver support and assistance to people who have Ataxia and need help to live fuller lives”.
It was with deep sorrow, we lost David at such a young age, David was full of life and wanted things one right”.
19-08-1988 – 03-01-2019 R.I.P
Hello my name is John Kelleher and I am 35 years old. I was diagnosed in 1998 with Friedreich’s Ataxia. I was walking, running and playing sports at the time. I was in hospital for an unrelated operation when diligent doctors noticed I walked with a very wide gait. I didn’t notice anything strange. At the time I was told I would end up in a wheelchair and that there was no cure or treatment. I thought I might be 50 or 60 getting a wheelchair. I was 28 when I got my first wheelchair. Up until 23 I played golf. Now I use a wheelchair full time. My life has changed yes but I work (as an IT Developer), socialise, travel, have my hobbies and I am independent. I have travel led around the world Iceland, Australia, USA and the UAE. I am very lucky to have great family and friends whom have helped me out when needs be. Slowly my abilities are lessening such as getting around, getting dressed are becoming slower. I have a recumbent trike and I do some physio work to slow down FA as much as I can. The recumbent trike helps a lot in my opinion. In 1998 there was no treatment no cure now there still isn’t but there is a lot of promise.
“I want to share my experiences to help others with Ataxia’s, via Ataxia Foundation Ireland I can do this”.
I am 58 years old, the oldest of three children, I got very sick when I was ten years of age, that was 1973. The Medical world wasn’t then what it is now and, I was being treated by Orthopedic surgeons, and not Neurologists for many years before eventually getting to see one, so I had no diagnosis, for 27 years despite my sister being diagnosed 10 years after me visually. I eventually was diagnosed with an unknown FA.
I like, many young people facing into the unknown with FA, withdraw from society to try to deal with it ourselves, and my school friends did their best to keep in touch but eventually you are on your own, you dread the visitors and relations calling and you go nowhere, it’ similar for all ages, affected in different ways, through school, teens wanting to be “Normal” find boyfriends or girlfriends perfectly normal things for anyone to want there’s anger, frustration, for me I woke up one morning deciding, I needed to get a job to sustain my interest in music and racing bikes, we lived in the country at the time, but hitched a lift into town and went to the local bakery and the owner gave me a part-time job 6am to 8:30, and 9:00 to school, Saturdays 6 to 11:00 and fulltime during the summer bakery work and wash 6 delivery vans. Carrying trays of bread each with 12 loaves of bread sometimes 2 trays at the same time while wobbling with FA, never fell once and I reckon was the best physio I could get while I worked, not one person treated me with sympathy, obviously that was just my story but laugh every day don’t give up, I have the lived experience of FA and there’s not much I haven’t experienced and am using that to help our members.
About 10 years after I got sick, my sister did too and she was diagnosed with Friedreich’s Ataxia visually within two weeks, I was diagnosed through Genetic testing in 1997! It was a rare form of Friedreich’s Ataxia I now use a powered wheelchair.
I have 45 years of experience of Disability and because of the nature of Friedreich’s Ataxia, have experienced many stages of disability along the way and want to do my part to improve the lives of disabled people in Ireland.
“I want to do what I can to improve things for people with ataxia and disabled people in general and Irish societies attitude towards it”.
