Merry Christmas everybody! (5 days late but it's better late than never!) I hope you all had a great time and have a fab new year!
I've done it again, forgot to update my blog...for 4 MONTHS!!! Last time i posted, i told you that i had recieved confirmation about my wheelchair and that it was on its way. Well, i finally recieved it on 13th October and i LOVE it!! It took me about a week to get used to driving it, i've never driven a front wheel drive wheelchair before and they told me it could take a while to get used to. I've been driving it for almost 3 months now and i dont think i will ever want to drive a rear wheel drive again! Everything is so much easier in this chair and it is so much more manouverable, i can easily drive and turn in small spaces, it's great! I'm still getting used to the standing function, they told me to take it slowly as i've never stood before. The first time i stood up, it felt really weird, i had to sit down after a few minutes but now i can manage around half an hour! It feels so good to be able to stand up, it allows me to stretch my legs and my hips and it just feels great!
Healthwise, i haven't been too good lately, i had the flu about 2 weeks ago. I went to see the G.P because i had a really bad sore throat, fever and was really tired (my usual G.P wasn't there so i had to see a different dr), he examined me and said that i had the flu. The G.P that i normally see, gives me antibiotics straight away but this one said "the flu is caused by a virus so antibiotics won't work". So i went home with his advise to drink plenty of fluids and get plenty of rest. This was on the Monday and on the Wednesday i had an appointment at the hospital for my 6-monthly check-up with my respiratory consultant and my neuromuscular consultant. By the time i got to the hospital i was still feeling ill and had started coughing up green stuff. As soon as my Dr's seen me they weren't happy that my G.P hadn't put me on antibiotics and they prescribed me some straight away. They explained to me that even if it is a virus, i still need antibiotics because i don't have much "respiratory back-up" so if it did turn bacterial it would turn nasty very quickly. I started my antibiotics as soon as i got home and i improved every day. They want to see me again in 3 months. I was worried that i might have been poorly for Christmas but i wasn't!
I had a good Christmas and ate so much food! I spent Christmas at home with my mum and my grandparents. I got lots of presents, my mum bought me the new Manchester United shirt! We didn't go out much over Christmas because we had so much snow! It's finally gone now, i just hope it doesn't come back!
I hope you all had a good Christmas and have a fab 2011!
Thursday, 30 December 2010
Thursday, 26 August 2010
Exciting times!
Well, i have good news!... My new wheelchair is on it's way! We recieved the long awaited news on Friday 6th of August that the charity we applied to (Caudwell Children) were kindly funding 80% of my nearly £19,000 chair! I was over the moon, it felt like i had won the lottery, i'll be forever grateful to Caudwell, if it wasn't for them i could only dream of getting this chair. The remaining 20% was partly funded by my wheelchair voucher from the NHS and my Nanna kindly paid for the remaining £800.
On Monday, i was measured up and the final order has been made. I received a letter yesterday from the suppliers of the wheelchair to say that the estimated date of delivery is 04 October 2010. I'm so excited, it'll totally change my life and give me much more independance.
My favourite time of the year is also here and that can only mean one thing...FOOTBALL! Yes, the football season is back underway and we have another long exciting season ahead. I was back at Old Trafford for the first game last Monday night which was against newly promoted Newcastle where we had a convincing 3-0 win. For me, there is nothing better than sitting in "The Theatre Of Dreams" and watching the best team in the world, Manchester United. We had a frustrating weekend, only managing to draw 2-2 with Fulham but with West Ham next in line at Old Trafford, i think we will make up for that disappointment! I'll be there on Saturday cheering them on, lets just hope i don't end up with a sore throat like last time!
Well that's all i have to say for now, i'll update soon, hopefully with pictures of my new chair!
On Monday, i was measured up and the final order has been made. I received a letter yesterday from the suppliers of the wheelchair to say that the estimated date of delivery is 04 October 2010. I'm so excited, it'll totally change my life and give me much more independance.
My favourite time of the year is also here and that can only mean one thing...FOOTBALL! Yes, the football season is back underway and we have another long exciting season ahead. I was back at Old Trafford for the first game last Monday night which was against newly promoted Newcastle where we had a convincing 3-0 win. For me, there is nothing better than sitting in "The Theatre Of Dreams" and watching the best team in the world, Manchester United. We had a frustrating weekend, only managing to draw 2-2 with Fulham but with West Ham next in line at Old Trafford, i think we will make up for that disappointment! I'll be there on Saturday cheering them on, lets just hope i don't end up with a sore throat like last time!
Well that's all i have to say for now, i'll update soon, hopefully with pictures of my new chair!
Friday, 18 June 2010
Hospital went smoothly!
Hi, just a quick update to say that my appointment in the chest clinic on Wednesday went really well. My doctors were really pleased with me and all my blood gases (oxygen, waste gases etc) were all perfect! This means that my bipap is doing it's job and keeping me healthy. I don't have to go back to the clinic until December unless we have any problems. No more hospital appointments this month!
Still no news on the wheelchair, my mum contacted them yesterday because we were getting slightly worried, it's been nearly 4 months since we applied for it. They said my application is due to be looked at any day now and a decision will be made. I'm quite anxious about it, if i got this chair it would absolutely change my life and give me so much more independence and confidence, i just hope they say yes, getting this chair would be like winning the lottery to me, it means so much. If they do say no, it's going to take an awful lot of fundraising to raise £18,000 and i don't know if that would be possible.
Anyway, think positive and positive things will happen...
Still no news on the wheelchair, my mum contacted them yesterday because we were getting slightly worried, it's been nearly 4 months since we applied for it. They said my application is due to be looked at any day now and a decision will be made. I'm quite anxious about it, if i got this chair it would absolutely change my life and give me so much more independence and confidence, i just hope they say yes, getting this chair would be like winning the lottery to me, it means so much. If they do say no, it's going to take an awful lot of fundraising to raise £18,000 and i don't know if that would be possible.
Anyway, think positive and positive things will happen...
Saturday, 12 June 2010
Update
Hi everybody. I'm sorry it's taken me so long to post on here (3 months!), i did say when i first started this blog that i would update it regularly but it kept slipping my mind and i haven't really had much to post about.
In my last post, i told you all about my dog Sparky who sadly had to be put to sleep. Well we now have a new dog called Poppy, she is a Jack Russell Terrier and she is now almost 13 months old. We got her a week after we lost Sparky. One of the neighbours heard about us and came knocking on our door, she told us that her daughter had a 10 month old Jack Russell but she is a nurse who works 12 hour shifts so she was unable to look after her very well as she was out of the house all day and she wanted the dog to go to a good home where she could have a happy life. We said we would think about it as we were still very upset about Sparky. After thinking about it for a few days, we all decided it would be a good idea to take in this dog. After having a dog live with you for 16 years, it suddenly feels very strange not to have that canine company around! Even though we loved Sparky very much, and always will, we still had room to love another. If we didn't take Poppy in, she probably would have ended up in a shelter and that is an awful thought!
Poppy has settled in really well. When she first arrived, we all thought "Oh My God, what are we taking on!" because when her owner brought her to us, she was running around the house CRAZY! Nobody could catch her and she left a blanket of white hair behind her everywhere she ran! Her owner was very upset to be letting her go, in fact she was devastated, she cried the whole time she was here! Now we all know why she was so upset, Poppy is the most loveable dog ever! She is so happy with us, we have a huge garden which she LOVES, she chases all the birds, flies, bees, bugs and she was even chasing a toad yesterday! She loves having cuddles and kisses and always sits on my knee. She knows that she has to be gentle with me and she even knows that my left arm is the weakest so she always comes to the right hand side of me so i can stroke her, what a clever girl! After 3 months with Poppy, i am so attatched to her, i absolutely adore her!
Last time i posted, i also told you all about my problems with my wheelchair. Well it got fixed for just over £300, but it's still very "dodgy". I just do not trust this wheelchair atall and have no confidence in it what so ever. It is so unstable, especially outside if i am driving on an uneven surface, the chair just slides! Hopefully, i will be getting a new, much better chair. The chair i am hopefully getting is recommended for people with SMA. It is an amazing chair called a Balder, it does EVERYTHING, stands up, lies down, tilts back and forwards, rises up and down, has elevating leg rests and many other functions. I had a trial in one a few months ago and it was AMAZING, i could actually drive outside effortlessly! The man who brought the chair for me to try could actually tell how much my wheelchair has affected my confidence just by the way i was driving the new one! I was driving it as if it was going to slide at the least uneven surface. After he reassured me that this chair could drive over almost anything effortlessly, i relaxed and was amazed by it. The only problem is the cost, it isn't cheap, £18,000! There is no way i could afford one, it would take me about 50 years to save up that much! So, i have applied to a charity who funds this kind of thing to children/young people and we are just waiting for the decision off them. Everyday when the mail comes, i can't wait to get my hands on it to see if the letter has arrived. This chair will truly change my life, so fingers crossed they say yes!
Healthwise i've been pretty good lately eventhough I had a chest infection about 4 weeks ago and was on antibiotics for 2 weeks, but no hospital - YAY! As i've got older, we've really started to manage my chest infections much better, instead of spending up to a month in hospital struggling to breathe, we can now cope quite easily at home and only end up in hospital if things get really bad and i am relying on my Bi-Pap. The cough assist has been a godsend, without it i definatly would be in hospital everytime i get a cold. I'm at the hospital next Wednesday to see my respiratory consulatand and my neuromuscular consultant for my 6 monthly check up and to check that everything is fine with my Bi-Pap, hopefully i won't have to have another sleep study but who knows, my consultants are very keen on keeping a check on EVERYTHING so i wouldn't be suprised if they want another one.
I'll try and keep this thing updated more often! I promise!
In my last post, i told you all about my dog Sparky who sadly had to be put to sleep. Well we now have a new dog called Poppy, she is a Jack Russell Terrier and she is now almost 13 months old. We got her a week after we lost Sparky. One of the neighbours heard about us and came knocking on our door, she told us that her daughter had a 10 month old Jack Russell but she is a nurse who works 12 hour shifts so she was unable to look after her very well as she was out of the house all day and she wanted the dog to go to a good home where she could have a happy life. We said we would think about it as we were still very upset about Sparky. After thinking about it for a few days, we all decided it would be a good idea to take in this dog. After having a dog live with you for 16 years, it suddenly feels very strange not to have that canine company around! Even though we loved Sparky very much, and always will, we still had room to love another. If we didn't take Poppy in, she probably would have ended up in a shelter and that is an awful thought!
Poppy has settled in really well. When she first arrived, we all thought "Oh My God, what are we taking on!" because when her owner brought her to us, she was running around the house CRAZY! Nobody could catch her and she left a blanket of white hair behind her everywhere she ran! Her owner was very upset to be letting her go, in fact she was devastated, she cried the whole time she was here! Now we all know why she was so upset, Poppy is the most loveable dog ever! She is so happy with us, we have a huge garden which she LOVES, she chases all the birds, flies, bees, bugs and she was even chasing a toad yesterday! She loves having cuddles and kisses and always sits on my knee. She knows that she has to be gentle with me and she even knows that my left arm is the weakest so she always comes to the right hand side of me so i can stroke her, what a clever girl! After 3 months with Poppy, i am so attatched to her, i absolutely adore her!
Last time i posted, i also told you all about my problems with my wheelchair. Well it got fixed for just over £300, but it's still very "dodgy". I just do not trust this wheelchair atall and have no confidence in it what so ever. It is so unstable, especially outside if i am driving on an uneven surface, the chair just slides! Hopefully, i will be getting a new, much better chair. The chair i am hopefully getting is recommended for people with SMA. It is an amazing chair called a Balder, it does EVERYTHING, stands up, lies down, tilts back and forwards, rises up and down, has elevating leg rests and many other functions. I had a trial in one a few months ago and it was AMAZING, i could actually drive outside effortlessly! The man who brought the chair for me to try could actually tell how much my wheelchair has affected my confidence just by the way i was driving the new one! I was driving it as if it was going to slide at the least uneven surface. After he reassured me that this chair could drive over almost anything effortlessly, i relaxed and was amazed by it. The only problem is the cost, it isn't cheap, £18,000! There is no way i could afford one, it would take me about 50 years to save up that much! So, i have applied to a charity who funds this kind of thing to children/young people and we are just waiting for the decision off them. Everyday when the mail comes, i can't wait to get my hands on it to see if the letter has arrived. This chair will truly change my life, so fingers crossed they say yes!
Healthwise i've been pretty good lately eventhough I had a chest infection about 4 weeks ago and was on antibiotics for 2 weeks, but no hospital - YAY! As i've got older, we've really started to manage my chest infections much better, instead of spending up to a month in hospital struggling to breathe, we can now cope quite easily at home and only end up in hospital if things get really bad and i am relying on my Bi-Pap. The cough assist has been a godsend, without it i definatly would be in hospital everytime i get a cold. I'm at the hospital next Wednesday to see my respiratory consulatand and my neuromuscular consultant for my 6 monthly check up and to check that everything is fine with my Bi-Pap, hopefully i won't have to have another sleep study but who knows, my consultants are very keen on keeping a check on EVERYTHING so i wouldn't be suprised if they want another one.
I'll try and keep this thing updated more often! I promise!
Tuesday, 2 March 2010
A bad week...
This past week has been really quite stressful. On Thursday, i went for a walk with my nanna to the shops, we had a look around the shops and then got some chips before making our way home. That is when the problems started. On the way home, my chair felt so sluggish and slow, i felt like it was going to stop! The walk normally takes us about 30 minutes, but after an hour and half we were only halfway home. We decided it was useless for me to keep driving it, it was going at snails pace and it was dangerous to cross the roads because it was taking so long, my arm was so tired from having to push the controller extra hard so we decided to stop and phone home to get my mum to come and push me home. Just as my mum was about to come to rescue me my uncle arrived at our house to visit us and he said that he would come and get me instead. He pushed me all the way home, i've never been so relieved to get home!
When i got home, my mum phoned the wheelchair centre, they arranged for the repair man to come out the next day. It was time to get the old wheelchair out (15 years old and it still works- just!). I hate using my old chair, it is just a basic powerchair and has no special functions such as the elevating legrests which i miss so much! On Friday the repairman arrived, he had a brief look at my chair but he said he would need to take it away to test the batteries, motors etc. We asked him how much he thinks it would cost to repair and he said he had a feeling the motors were the problem, they are £100 each but he said if it is the battery as well then we would be looking at a grand total of £500 maybe even more! Things always seem to go wrong at the wrong time! I'm supposed to be getting a new chair in a few months so we were hoping that this chair would last out until then. Now we had to wait for him to phone back to say exactly what the problem was.
We got the call on Saturday...good and bad news! The good news? The motors are fine! The bad news? The batteries need replacing, along with the tyres. He said the chair will be back with me by Tuesday (today) and it would cost £300. I was relieved that it wasnt going to cost £500 like he said it could and was glad that i could have it back soon.
On Monday, me my mum and nanna decided to go to bingo. My old powerchair which i was using would get me from A to B so we decided to go out. Everything was fine and then at 11.30 a.m my nanna got a phonecall off my grandad who was at home. Our Yorkshire Terrier had a seizure. He had sufferred from these seizures from being a puppy which have got a lot worse as he got older. He also had lots of other problems, his ears needed to be bathed twice a day with salt water & vinegar as they were always infected and he had lots of tumours in his ears (which we were told were non cancerous), he was deaf, nervous and also started to wee in the house at night. After he had that seizure my grandad took him to the vet (i didn't know), the vet said that the kindest thing to do was to let him go.
On the way home in the car my nanna told me, i was upset but managed to hold it together until i got home. He wasn't there, he didn't jump up on my knee, his food bowl was still full, his buscuits were still on the floor...he was gone. My grandad asked me if i wanted his collar, he gave it to me and the tears started streaming down my face. I just wish that i had the chance to see him one last time to say goodbye. He was 16 years old and we had him since he was a puppy (i was 3 when we got him) so its so strange not having him around, he was the best dog ever and i'll never forget him.
Today i got my chair back, as soon as the man walked in the first thing he said was "where's the dog?" He was always there, sat on his cusion on the couch. I feel lost without him, i'm just happy he isn't suffering anymore and hopefully he's in doggy heaven.
Sparky 05/July/1994-01/March/2010 R.I.P
When i got home, my mum phoned the wheelchair centre, they arranged for the repair man to come out the next day. It was time to get the old wheelchair out (15 years old and it still works- just!). I hate using my old chair, it is just a basic powerchair and has no special functions such as the elevating legrests which i miss so much! On Friday the repairman arrived, he had a brief look at my chair but he said he would need to take it away to test the batteries, motors etc. We asked him how much he thinks it would cost to repair and he said he had a feeling the motors were the problem, they are £100 each but he said if it is the battery as well then we would be looking at a grand total of £500 maybe even more! Things always seem to go wrong at the wrong time! I'm supposed to be getting a new chair in a few months so we were hoping that this chair would last out until then. Now we had to wait for him to phone back to say exactly what the problem was.
We got the call on Saturday...good and bad news! The good news? The motors are fine! The bad news? The batteries need replacing, along with the tyres. He said the chair will be back with me by Tuesday (today) and it would cost £300. I was relieved that it wasnt going to cost £500 like he said it could and was glad that i could have it back soon.
On Monday, me my mum and nanna decided to go to bingo. My old powerchair which i was using would get me from A to B so we decided to go out. Everything was fine and then at 11.30 a.m my nanna got a phonecall off my grandad who was at home. Our Yorkshire Terrier had a seizure. He had sufferred from these seizures from being a puppy which have got a lot worse as he got older. He also had lots of other problems, his ears needed to be bathed twice a day with salt water & vinegar as they were always infected and he had lots of tumours in his ears (which we were told were non cancerous), he was deaf, nervous and also started to wee in the house at night. After he had that seizure my grandad took him to the vet (i didn't know), the vet said that the kindest thing to do was to let him go.
On the way home in the car my nanna told me, i was upset but managed to hold it together until i got home. He wasn't there, he didn't jump up on my knee, his food bowl was still full, his buscuits were still on the floor...he was gone. My grandad asked me if i wanted his collar, he gave it to me and the tears started streaming down my face. I just wish that i had the chance to see him one last time to say goodbye. He was 16 years old and we had him since he was a puppy (i was 3 when we got him) so its so strange not having him around, he was the best dog ever and i'll never forget him.
Today i got my chair back, as soon as the man walked in the first thing he said was "where's the dog?" He was always there, sat on his cusion on the couch. I feel lost without him, i'm just happy he isn't suffering anymore and hopefully he's in doggy heaven.
Sparky 05/July/1994-01/March/2010 R.I.P
Tuesday, 12 January 2010
Me, myself & I.
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
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
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