Living with a Disability 💖

An amazing story from a truly amazing girl. I have lived close to Nicole my whole life and always knew her to be in a wheel chair and have a great group of friends, but never did I know the ins and outs of her story,

Please take a read and see how fabulous this girl is, and her message to people out there.

Ok so here is goes, For so long I’ve wanted to do a blog or whatever on my life as a wheelchair user.
It all started the day I was born 20 years ago, normal labour but when I came out my legs were smaller than normal and they were tucked up against my belly & feet were turned inwards, I was sent straight over to Temple street children’s hospital were they fitted me with splints (to keep my legs straight). They had no idea what was wrong with me they did loads of scans and tests and nothing was coming up.
I was sent home just for Christmas as I was born 4 days before and then after Christmas sent straight back in for more tests and still nothing was showing, every Muscle in my body was weak.
After a few months or so I was fitted with casts on each legs for a few weeks and I’d get them back on every once in a while but they didn’t seem to work either, I was in and out of hospital the first few months of my life and things weren’t looking up at all.
When I was about 4-5 months I got my first dose of pneumonia and had to stay in hospital for a bit. Around 8 months I had my third  dose of pneumonia and this was by far the worst one. The nurses in temple street told my mam that I was very ill and to think about getting me christened so my mam called in my close family and organised for me to be christened in hospital. According to my mam after my christening my lungs and every other muscle was getting a little bit stronger and after a while I was allowed home but was in and out of temple street it was like my second home and this stage.
Things started to get better and my muscles were getting stronger.
They also told my mam from day 1 I was undiagnosed. My doctor told my mam I would never be able to sit up, walk or crawl but little did they know.

I got my first wheelchair when I was 4 years old and also started school my mam was always set on sending me to a mainstream school. Looking back at pictures of me in a tiny little wheelchair is the best. Life was some what good I was making new friends living a normal life. My friends never treated me any different and I can’t thank them enough for that. My primary school days went past so fast and before I knew it I was moving schools and going into first year, now this is where the stress and anxiety started.
Trying to find a school that was wheelchair accessible was so hard I tried so many schools around my area and no where would take me until Rockford Manor took me on, they built ramps, lifts and other equipment for me.
I was now 12/13 and coming into my teenage years which was the worst years of my life. I started realising more about my disability and wasn’t accepting it. I was questioning why me? Why am I not like others? I was so depressed mainly because I was “different” then when I turned 14 the worst possible thing happened me I lost my dad so on top of trying to deal with this disability and two other deaths close to my heart along with some family issues and the fact I was still undiagnosed I became so depressed I would sit in my room all day and just cry. I wouldn’t get into my wheelchair because I would be so angry at it I’d shut myself off from the world I was so upset and angry at life and just wanted to be “normal”

Skipping a few years back
When I was 6 or so I started a youth group in my area and by god if it wasn’t for them I don’t know where I’d be right now! The confidence I’ve gotten for being apart of that is unreal, they made sure I was a part of every activity even if it was hard they would push me and give me the confidence I needed. I’ve been able to do rock climbs, quad biking, jump of cliffs and many more amazing things.
Nothing exciting was happening in my life from 15-17.
When I was 17 the biggest thing to date happened. They finally found a diagnoses after 17 years I now had a name to this disability. The tests they did to find out was by far the worst few days of my life. The morning I had my appointment in temple street and (doctor foley) told me she found out what I had was honestly the best day of my life! I felt the world lift off my shoulders. I’ve got “distal spinal muscular atrophy” (it’s basically my Brain telling my muscles not to work) I can proudly say now that I 100% accept my disability and I am very happy in my little life. Yes I come across so many obstacles but I deal with them because that’s what comes with having a disability 🙂
My dream job one day is to work with people like me and help them realise that there is a life out there and to never think of yourself any different and enjoy life and most importantly enjoy your disability ❤️

This girl is an inspiration to all