My name is Michelle and I am the proud mother of 3 gorgeous boys. Our youngest son George, was born with a rare condition called Centronuclear Myopathy. The condition affects his muscles and makes him profoundly weak and is a constant threat to life. He is ventilated via a tracheostomy in his neck, cannot swallow and is fed through a tube in his stomach and has a wheelchair for mobility. He is completely reliant on us and his carers for every aspect of his life.
Despite George's obvious physical limitations, his condition does not affect his brain and he has the intelligence of any other 8 year old boy. George goes to special school and main stream school five days a week and he loves to do all the things that other 8 year old boys to do, like hanging out with his friends, playing with his brothers, playing on his ipod and he loves Marvel super heroes and Angry Birds.
George is a very funny, cheeky, fun loving and clever boy and everyone that meets him, falls in love with his quick wit and cheaky sense of humour.
George has just received funding for a new power wheelchair and although we have a car that can take his chair, the car is very old and very unreliable! So we are trying to gather as much money as we can to buy a new one. One that wont let us down and leave us stranded in the most awkward places. The last time the car broke down, we were stranded in country Victoria, Australia, outside of Melbourne, and had to catch two taxis and 3 trains, just to get us home again.
Wheelchair accessible cars can be in excess of $100K once all the necessary modifications are made which is really out of the reach of most families, let a lone a single income family with extra needs and demands.
George's new wheelchair will be ready within the next few months, so we would love to get a new car before then.
Having a new car would mean that George and the rest of us, can go on family holidays safely, George can go to school and visit his friends without worrying that the car will break down and we were even hoping that we might be able to install a DVD player in the back so that George can watch movies on long trips (currently he just has to stare up at the ceiling and hope that we never guess his "I spy" challenges - There is only so many times that I can pretend to think of words beginning with "R" that are not "roof").
We would be grateful beyond words to get this funding!!
Being the parent of a child with such high medical needs can be very isolating at the best of times. Throw in an unreliable car, and your best laid plans of going to visit family and friends or take a holiday are too often thwarted. To know that people care about your story and are willing to help is beyond words!
We thank you in advance and hope that people will find it in their hearts to help.
Michelle, Russell, William, Anderson and George
- Stephen Gledden
- Cheryl Morello
- Broderick Jenkins
- CARL RAMAGE
- grant mahony
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