Hey everybody, well i'm new to all this blogging - facebook is more my kinda thing, but i thought i'd give this a try, whether people will read it and like it is a different case! Well i don't really know where to start so i'll tell you a bit about myself...
My name is Danielle, i'm 18 years old and pretty much your average teenager, except one thing...i'm severely disabled, i have a rare neuromuscular disease called Spinal Muscular Atrophy (SMA) type 2, this basically means that my muscles are extremely weak and are likely to get weaker as i get older. I can't walk, stand or even lift my arms up, but i'm very happy as i am and try to live my life to the full.
I suppose i should tell you all how it all started...
I was born on the 27th April 1991, a "perfectly healthy baby". All seemed well, i was feeding well, doing everything i should be doing and seemed to be developing normally. My mum was happy with me but she did notice that i was a little "floppy". When changing my nappy, i wouldn't kick my legs like other babies did but my mum just thought i was a good baby. Me and my mum live with my nanna and grandad, my mum and nanna slowly started to notice my development was slowing down. I could roll over, crawl and pull myself up to a standing position but i started doing this less and less. When crawling i would crawl with my head on the floor, my mum and nanna at first thought i was copying the dog, little did they know this was due to my neck muscles being weak. When i went to see my dr, my mum mentioned her concerns and the dr just said not to worry "she's just a lazy baby, she'll catch up". But i didn't, i was doing less and less each day when i should have been doing more. After seeing my dr again it was agreed for me to see a paediatrician, he examined me and guess what he said?? "She's a lazy baby, stop passing her things make her reach for them herself". Again, my mum was sent home thinking she was just being paranoid.
A few more months passed and i just seemed to be getting weaker, no matter how much i was encouraged to reach for things i would just get frustrated and cry. I was seen again at the hospital and by this time, i could no longer sit myself up from a lying down position and was even struggling to roll over. After examining me, the doctor then realised that something was seriously wrong. I was reffered to a neuromuscular specialist, he was pretty sure that i had a disease called Spinal Muscular Atrophy (SMA), i had to have a muscle biopsy to confirm the diagnosis. A week later my mum and nanna returned to the hospital with me to recieve the news that i had SMA type 2. I wasn't given a good prognosis, they basically said that i would be lucky to live through childhood, never mind reach adulthood.
The Dr who diagnosed me retired shortly after so i started seeing another Dr, she arranged for me to start having physiotherapy and gave my mum more of an idea of what my needs would be as i got older. She was told that i would rely on a wheelchair and explained to my mum how vulnerable i am to colds and chest infections. After getting my wheelchair when i was two years old, i did really well for the next few years. I started school and everything was going well. I was at a school for children with special needs, but it was soon decided that i needed to be in mainstream school because i was being held back (SMA doesn't affect people mentally in any way). I did really well in mainstream school, i was the first child with a disability to go to that school and they always did everything that they could to meet my needs and made sure that i could take part in the same activities as my classmates.
I missed a lot of school due to illness and being in hospital. I suffered from a lot of chest infections and pneumonia's and usually ended up in hospital for weeks on end. I also spent a lot of time in hospital having operations on my spine to fix my scoliosis with metal rods, but again my school was very understanding and flexible. After 2 of my operations i was off school for 3 months and had to be taught from home. Since i had my spine fused when i was 14, i have been really well. It was a big operation but was really worth it.
I've now gone through the big, scary transition from children's services to adult services, i was really worried about this but suprisingly it has been a really smooth process and i now feel just as comfortable with my new Dr's as i did with my old ones. I was kind of worried that they wouldn't know much about SMA (not many people do), but the hospital that i have been transferred to are really good and have better facilities for me, my doctor's (neurologist & chest dr) really understand my condition and i feel safe and so does my mum - she was very worried about me being transferred to the adult hospital as the childrens hospital took such good care of me over the years, it was like a home from home! We lived just 2 minutes away from the children's hospital and they agreed an 'open door policy' with my mum so that if ever i was ill, we could just go straight in.
The past few years i've been really healthy and have had no serious hospital admissions. I believe that the reason i am doing so well now is because of the great care i received as a child and also the equipment which has now become available over the years for people such as myself.
After leaving school i went on to college to study health and social care, i was looking forward to this but it wasn't what i expected. The college was great for meeting my needs and had lots of carers just like my school but i never really settled in. I found some (most) of the carers to be very patronising. They were used to caring for students who had physical disabilities but most of them also were affected mentally, i would find that some of them would talk to me in the same way and then they would realise and apologise. I wasn't used to being in that kind of environment, at school my carers would give me my own space and i would ask them when i needed something, this was good because i was able to mix with the other pupils and meant i still had my independance. At college i felt kind of smothered by them, they sat by my side in class and some of them were even reluctant to leave me at lunch time-i don't know what they thought was going to happen to me!
I also had problems keeping up with the ever growing pile of coursework, sometimes i would have to do up to 5 essays in a week (some of them over 30 pages long) and when you have hands which tire after one paragraph you can probably imagine how tough i found keeping up. I did have my carers who would type for me but most of them were slower than me because they couldn't type without looking at the keyboard. I started to have a lot of time off college due to hospital appointments and also because i started to get a lot of colds. When i got a cold i would usually be off college for a week, sometimes two and i think my teachers thought it was strange to have so much time off JUST for a cold but i don't think they actually got the message of how dangerous a cold is for me. In the end i decided to leave because i was under constant pressure to keep up with the work and i think that is why i kept on getting so many colds because i was so run down. Since leaving college i have had just one cold, which is a massive improvement from having one every other week!
Since leaving college, i enjoy having more time to do whatever i want. I love going shopping, i've never got enough clothes (even though my wardrobe is bursting). I also love going to the football matches, i'm a massive Manchester United fan and i go to almost every home game with my mum who is also a massive fan. I've been lucky enough to meet all of the players which was a dream come true and something i will never forget. In my spare time, i love to come online and chat with friends, go on Facebook etc. I also try to raise awareness of SMA, as it is the number 1 genetic killer of children under two years old, yet hardly anybody has heard of it. The internet is an easy way to raise awareness as you can get the message out to hundreds of people very quickly. Last year i set up a group on Facebook to raise awareness of SMA which now has over 4,000 members and will hopefully grow much more in the future.
Well now you all know my life story, i'm off to bed. I will post again soon, with my recent goings on if any of you are interested (probably not after this long post!).
Danielle
