Maisy has spinal muscular atrophy type 2, only 1 in 6000 babies are affected each year. sma does not affect the brain, and chidren with sma are proven to have very high intelligence.

Hello, My name is Maisy Hutley, I was born on 04/01/2010 weighing a healthy 7lb 6oz. After being told they had a perfect, healthy baby girl my mummy and daddy took me home to start our life as a family of four.

I was so lucky and had a big sister waiting to meet me, her name is leila she is now 4 years old.

As I got bigger and bigger I learnt to do lots of new and exciting things, at 5 months old I sat up all by myself, then I learnt to crawl, and at around 9 months old I was pulling up onto my knees, the world was looking like a bright and wonderful place ready for me to explore........But then my journey stopped.

At 10 months old my mummy and daddy were worried as I wasn't bearing weight through my legs. I couldn't quite manage to get on my feet.  That's when I had to see a doctor, finally at 15 months old i was diagnosed with spinal muscular atrophy type 2.

We soon learnt that 1 in 40 people unknowingly carried the faulty gene that causes sma. where both parents are carriers a baby has a 1 in 4 chance of being affected. The consultant explained that mummy and daddy had been extremely unlucky and that there was nothing they could have done to prevent this from happening. SMA is a cruel and degeneative disease and at present has no treatment or cure.

Everyone around me seemed so sad and kept crying, but not me, I was alive, happy and a joy to be around. I love to talk, and make everybody laugh, my mummy says i'm a little miss chatterbox! 

I am still able to sit up by myself, but can no longer crawl, I will never stand independently or walk. I love playing with my sister but because of my immobility I cant always play with her how I would like to. It would be magical to explore and learn about the world around me, and also cause some mischief with leila! 

I have been very lucky and have had a small powered wheelchair on loan to me, however i am getting bigger and it is almost time to give my chair back.

A few days ago I tried out a powered chair called a "snapdragon" and it was amazing. I took it for a drive outside, it went super fast! I loved the feeling of the breeze on my face. It even goes up and down.  I could go up really high which is good for peeping over things, or to look out of the windows in my home, I even caught a glimpse of my pretty little face in the mirror all by myself. I could go right down to the floor which could be fun for hide and seek with leila! or if I drop something I could pick it up all by myself. It would make it much easier when we have a treat and go out to eat as a family I could just drive straight up to a table and adjust it to just the right height.

The best thing ever about the snapdragon was being able to be held in the standing position and drive along all by myself, I really felt like I was ice skating, mummy,daddy and leila couldn't believe how tall I looked.

Unfortunately a snap dragon is not provided by the NHS and will cost us £21,490  this seems like an enormous sum, but can you put a price on freedom to move?

All of my family and their friends are trying thier hardest to get the funds together to get me my very own snap dragon but they cant do it alone.

We will achieve this. We must achieve this.

Any help would be greatly appreciated,

thankyou for taking your time to read maisy's story

lots of love the hutleys x x x                                                                                       

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