If you really believe in something it is always within your reach
When I was growing up with NF it was very hard. As you know children can be mean without realizing what they are saying
or doing. I was called names and jeered as more fibromas appeared.
Growing up with NF can be difficult
When I left school, I did an engineering course with AnCo which is now known as FAS. While I was on the course I was
sent on a two week job placement, after which I was offered a fulltime job. That was almost thirty-nine years ago.
When I was seventeen, I started jogging and took part in 10Km road
runs which I was completing in sub forty minutes.
Around the same time, I joined The Civil Defense. There I met a lot of
people and we became good friends. At first when they saw all the
fibromas, lumps and bumps they all asked the same question, all of
which I answered and that was it. I stayed a member for about 12
I joined a sport and social club in 1993, and again I was asked all the
same questions. This is where I met my wife. While we were going out
together, I was always open with her about my NF. I also took her to
see “an NF specialist”. We have one child and we were delighted to
learn he does not have the condition.
Over the years I have had a few operations mostly to remove
fribromas, through all this time my family have been very supportive
and encouraging, in everything I tried to do.
In 2001 one of my friends told me he was thinking about running the “Dublin City Marathon”. I agreed to train with
him. We decided to do if for charity and did it for “The Neurofibromatosis Association of Ireland”. We raised almost
€800 between us. We both finished the marathon even though it took us over 6 hours.
A couple of years later I started to get involved in the Association and joined the committee. From a personal point of
view the best thing to happen in the association over the last few years was:
Bringing the European Conference to Ireland and giving the ordinary person an opportunity to talk to “the top medical
people on the condition”.
In 2016 I was told that I had a tumor on my pancreas. I had an endoscopy and they could not get a piece to do a
biopsy. They took me in to open me up and get a biopsy. They told me I had six weeks to live because they thought it
was cancer. Luckily it was a benign fibroma.
Now it has grown I have to have a pancreatic bypass. I am waiting on a date but the operation has a 98% success rate.
I have always been optimistic and try to stay positive looking to the future.
Some people think that because you have a medical condition you cannot do certain things, but take if from someone
who though he would never do a marathon; if you really believe in something, is it always within your reach.
You must be logged in to post a comment.