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 9 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 just returned from Florida in the United States following a ten week intensive physiotherapy programme which has seen me make huge improvements I am now so much stronger, however my family need to continue fundraising for me as they have to fund all my physiotherapy in the uk and abroad them selves. This isn’t the only expense as e erythropoietin g 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 a lot of our home at a huge expense but I know have a lovely down stairs bedroom and bathroom. The next stage is to extend our home at the back. So that I can access the kitchen and dining area so we can sit as a family and so I can engage in normal family activities like messy p,at and baking. They also hope to make the garden accessible for me as at the mi ute they can not get me into the garden at all.
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