Roisin McConnell’s Story

My name is Roisin McConnell and I am living
in Co Westmeath. I am from Athboy, Co
Meath originally and I am a true Meath
woman and have not forgotten my roots.
Living with NF I have a couple of
complications and NF has had a major
impact on my life. I was born with a
tumour which affected the right side of
my face. The doctors thought it was
malignant and they said I wouldn’t see
beyond my sixth Birthday because of this.
I never got the chance to attend school.
I learned to read and write from watching
Sesame Street. Later in life at the
age of 21 I went to an adult college and
successfully passed my junior cert. I had
the tumour removed when I was 12 years
of age. This resulted in me losing my
right eye later on in my life. I wear a
prosthetic eye since, I was also born with
a weak bone in my left leg. The weak bone
prevented my leg from growing so at the
age of 16 I had my leg amputated and was
fitted with a prosthetic leg. This was a new
lease of life for me as I was now more
mobile and had a lot more freedom and
made getting around easier.
I didn’t let NF and all the complications it has thrown at me stop me from living a normal life. I am
doing a job that I absolutely love as a home help. People accept me for what and who I am. They don’t
treat me any different and never look down on me as being different. My motto is to go and try things.
I have walked 10 km marathons, I can drive and I am working. I have a lot going for me I have my health and
lots of wonderful people in my life. THIS IS ME. I had a horrible comment said to me once by
someone, that I gave my daughter that dirty disease and they meant it was my fault now. NF is not
contagious so I don’t refer to it as a disease, it’s a condition. There is a 50 /50 chance of passing on that
remark was hurtful and nasty but I managed to ignore it as people like that are ignorant and I know
myself I didn’t internally go out and give my Daughter NF. She is perfect and doesn’t have the problems
I have. So on a final note, I would like to thank people for reading this. I am delighted to share my
experience of living with NF as it is very therapeutic and a great way of getting things of my chest,
especially my last comment where I was actually blamed for giving it to her. Roisin