The Chromosome Chronicles
My name is Dermot Devlin, I come from a small village called Greencastle in Co. Tyrone, Ireland. Much like Greencastle, I am small, too.
How it all began…
So let’s start from the beginning, I was born on the 3rd of December, 1979 and had breathing problems, so was immediately transferred to the Royal Victoria Hospital in Belfast. Thankfully, I was okay after that and there were no big issues. However, my parents both knew that things weren’t as they should be and often went to the doctor’s about me. My GP in the early 1980s told my Mum that she was an over anxious mother, but she kept fighting them.
The diagnosis that changed my life…
At 18 months, I was diagnosed with a genetic disease called Mucopolysaccharide. I have Morquio type A, which means I have a type of enzyme that is missing called beta-galactosidase. As you can all clearly see, I am just 3ft tall and use a wheelchair. I also have hearing and respiratory problems, which causes a lot of issues, not to mention my scoliosis. Though, despite my short stature, I am not short on life experience.
My educational journey
I attended main stream primary and secondary schools and they have been wholly positive experiences, which helped shape me into the man I am today and showed me that I can be who I want to be and nothing can limit me.
After school, I enrolled in a local college to study computer science and started the next stage of my life. There, I was involved in setting up the very first Student Union and getting a social room for the students. I was elected Disability Officer at the same local college and ensured that there were many changes made to the premises for their students who have disabilities. I made sure that automated doors were installed into all entrances and exits of the buildings and that the ground was tarmacked between buildings, as there were rough stones when I first started. Again, the foundation stones were being set for the person who I was about to become.
I then moved to Derry to further my studies. This became one of the biggest challenges I had faced, as it was the first time I moved out of the family home, but I had a lot of support from my family and the network of support at the college was excellent. I made a lot of good friends, had a lot of fun…probably too much fun at times!
Stepping out into the ‘real world’
After all that fun was over, I started working for Omagh Enterprise and it was something that worried me greatly. Would I be able to be work, would I fit in, would I be able to keep up with the pace? I need not have worried, as my colleagues at my office quickly became my second family.
When I first started work, I worked full hours between Monday and Friday. This worked well for a few years, but as time moved on, I found that I was unable to keep up with the workload and that my energy levels just wasn’t able to match up compared to when I first started. After a few hiccups, headaches and tears, I finally sat down and had the conversation with my colleagues. I just wasn’t able to do it anymore. I need not have had these worries, as it soon proved that we do not have to carry the load ourselves and should never be afraid to extend our hand and ask for help. I was able to reduce my hours and juggle my duties around. This proved to be very beneficial to both the company and me. I was then able to concentrate on my strong points. So much so, that my role has evolved over the years! To reiterate, never be afraid to ask for help.
My Way Access – built by people with disabilities, for people with disabilities
Over the years, I headed out to many places with my friends and away on short weekend breaks. One of the main problems I found was, that there was never any way to find out in advance if the disabled facilities in the various places I’d be visiting would be accessible for me and my needs
With this gap in knowledge, I developed My Way Access. It went through many different designs and ideas, before it reached what it is today – providing everyone with a disability, a voice.
I got a lot of support from my family, friends and work colleagues at Omagh Enterprise in setting up My Way Access. What started as an online directory for people with disabilities to see if a location is or isn’t possible for them to visit and to allow them to add their own views, has grown to so much more. It has become a platform for all to share our views on news, which affects us and to fight for social changes within our society.
Now people from across the world can add their own reviews about places they have visited, what their experiences were like, such as access and equally how they were respected by the staff on the premises. It is growing across Ireland and we have several reviews from London. However, this cannot work without you. Together, we can improve this online directory by having a truly united voice to represent people with disabilities.
I use the website to blog on various issues in the news, which are both important to people with disabilities and myself. I have blogged on various topics such as Welfare Reform, Tax Credits and what are the correct words to use when speaking to or about someone with a disability.
One of the most important issues I have used My Way Access to speak about in the past was about my disability, Morquio.
Another major health setback
I have had many health setbacks in the last 10 years. On one occasion while returning from a religious pilgrimage in Lourdes, France, I collapsed on the airplane journey home. If not for the quick reactions of the medical team onboard the plane, I might not be here today. My respiratory system collapsed due to the progression of my disease. So from that point, I had to wear an oxygen machine at night when I sleep.
A few years later, my respiratory system got worse and I was admitted to the hospital again. I now have to wear a Nippy machine each night to aid my breathing during my sleep to ensure everything is fine and I have more energy the following day.
Starting Enzyme Replacement Therapy
In November 2016, I started a treatment called Enzyme Replacement Therapy, which is approved by the European Medicines Agency (EMA) and United States Food and Drug Administration (FDA) for this condition, and can make a huge difference to anyone who takes it. The drug is called Vimizim.
Since then, my health has increased considerably. I now have more energy throughout the day, my mental well-being has improved a lot over the years and my breathing issues continue to ease progressively. With all this, it has given me the ability to focus more at work and to be more proactive with My Way Access.
My 15 minutes of fame!
As a result, I have been interviewed live by the BBC News Channel on disability issues a few months ago and recorded a programme for BBC Northern Ireland, which will be aired soon.
I have also travelled the length and breadth of Ireland giving talks and for the first time in 10 years, I will be boarding an airplane this summer to England for a talk.
Moral of the story
The only thing holding you back is YOU! If you want something, visualise it and go for it!
*Video of My Way Access – The Epic Campaign sourced from YouTube.