My name is Isabella Grace & this is my website. It has been set up by my family and friends to help raise awareness of my condition and to raise funds for my ongoing treatment.
I am 11 years old and suffer from a rare chromosome disorder…. So rare in fact that it doesn’t yet have a name! Not much is known about my disorder at the moment but as a result I was born with two holes in my heart. I am also registered blind and suffer with severe epilepsy.
I can’t eat like regular kids and am fed through a tube directly into my tummy. I have very little muscle strength so sitting up unaided has been a struggle for me. I’m yet to master standing or walking but I hope to get there one day.
I’m not talking yet as I like to keep everyone guessing as to what’s on my mind but I love to smile and giggle.
Despite all of this I am a very happy little girl with family and friends that love and care for me. They have been fundraising to pay for my treatment since I was a baby and will continue doing so for a long time to come. The main problem is…… I’m expensive!!!
My family have all worked so hard to give me the best start in life, I have completed two courses of intensive therapy in America and more recently my family have found a centre in Slovakia called the Adelli centre I have already completed one two week programme and am due to attend again in may. I find the therapy hard work but I really do try my hardest. Life is so much better since I have been attending my therapy before this I spent most of my life in hospital hooked up to machines as I got ill so often. Even the smallest of colds would result in an admittance as it would very quickly progress to pneumonia as I had very little strength and couldn’t cough to clear my chest. I can now sit up on my own and it’s great that I can now decide for myself if I want to sit up or lie down, I am not talking yet but I have definitely mastered singing and love to sit up in bed and serenade my family at two in the morning. who knows what I will be able to achieve in the future but I am just happy that I got to spend this birthday at home with family and not in hospital.This isn’t the only expense as everything for me is so much more expensive including car seats that cost thousands but I will soon become so big that my family will have to buy a wheelchair adapted car. My family have worked hard and have managed to adapt our home and garden so that I can access the garden and all communal living areas which was previously something that wasn’t possible, however this has left them with a huge amount of debt which makes it even more difficult for them to pay for my therapy and equipment.
My families dream is that I will continue to get stronger and that one day I may stand and take my first step and that I will have a happy life and that I will be able to make wonderful memories and experiences with my family and friends.
There are lots of Charity Events & projects coming up which you can find out all about on this website.
It would mean the world to me and my family if you could find a way to support us in our fundraising work.
A BIG thank you,
ISABELLA X X