Maisy's fund.
Donation protected
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 7.
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 she is my best friend.
We have set up this site to hopefully raise enough funds for many items of specialist equipment that Maisy is unable to get funded via the NHS.
Items are to include a panthera lightweight manual wheelchair, that will allow Maisy to self propel giving her more independence. A kiddy walk mobile standing frame that will help delay onset of curvature of the spine. We are also trying to raise enough funds for an additional piece of ceiling tracking to enable us to safely hoist Maisy from her bedroom directly into her wet room for bathing and toileting, our local council have refused to fund the cost of this extra piece after completing the adaptions so we have been forced to try and cover the cost ourselves which is in the region of £2000. We are also hopeful that eventually we could purchase Maisy a specialist height adjustable bath to replace the existing bath,these are priced in the region of £5000! this will allow Maisy to bathe with much less difficulty as she grows.
Maisy loves to play outside with her sister, we would love to purchase her a specialist electric bike wheelchair attachment which can be used at home and at school during the warmer months this is made by a company called GBL wheelchairs and it's called a (quickie attitude) which retails at just over £3000.
We as a family are hoping to to be able to purchase these items to make Little Maisy's life as independent and happy as it can possibly be.
We cant can't put into words how much we appreciate all the love, care and support everybody has shown us as a family so far with the fundraising.
Thankyou from the bottom of our hearts
The Hutleys xxxxxxxxx
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 7.
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 she is my best friend.
We have set up this site to hopefully raise enough funds for many items of specialist equipment that Maisy is unable to get funded via the NHS.
Items are to include a panthera lightweight manual wheelchair, that will allow Maisy to self propel giving her more independence. A kiddy walk mobile standing frame that will help delay onset of curvature of the spine. We are also trying to raise enough funds for an additional piece of ceiling tracking to enable us to safely hoist Maisy from her bedroom directly into her wet room for bathing and toileting, our local council have refused to fund the cost of this extra piece after completing the adaptions so we have been forced to try and cover the cost ourselves which is in the region of £2000. We are also hopeful that eventually we could purchase Maisy a specialist height adjustable bath to replace the existing bath,these are priced in the region of £5000! this will allow Maisy to bathe with much less difficulty as she grows.
Maisy loves to play outside with her sister, we would love to purchase her a specialist electric bike wheelchair attachment which can be used at home and at school during the warmer months this is made by a company called GBL wheelchairs and it's called a (quickie attitude) which retails at just over £3000.
We as a family are hoping to to be able to purchase these items to make Little Maisy's life as independent and happy as it can possibly be.
We cant can't put into words how much we appreciate all the love, care and support everybody has shown us as a family so far with the fundraising.
Thankyou from the bottom of our hearts
The Hutleys xxxxxxxxx
Organizer
Craig Hutley
Organizer
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