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RACE FOR ACE
RACE FOR ACE
Story
Ace Bartlett was born on the 8th of December 2011, probably one of the cutest and happiest babies ever to be born at Epworth Hospital in Melbourne.
Weighing in at 6lbs 7oz, everything was normal in Ace’s life until a couple of months down the track.
A sudden change of behaviour and feeding issues were the reason Ace found himself at the Royal Children’s Hospital surrounded by doctors and specialists scratching their heads.
On first inspection it was believed there had been blood clot in his brain, but later it was found to be calcium deposits that had damaged essential parts of his brain which control his motor development.
The damage is irreparable and means signals from the brain do not reach his parts of the body like his arms, legs, neck and eyes.
Ace was diagnosed with a rare type of neurodegenerative disorder called Aicardi Goutierres Syndrome.
He has similar issues with movement as a child with cerebral palsy does, in which case Ace will be attending CPEC (Cerebral Palsy Education Centre) to assist with therapy.
For Ace to be able to attend CPEC we have to volunteer for various charity events throughout the year, one of them being the Melbourne Marathon.
Team Race For Ace is raising money and awareness for children with developmental issues.
ALL donations you give go directly to charity, so click on DONATE NOW!
Thank you for your support and helping to make a difference.
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CPEC (Cerebral Palsy Education Centre)
CPEC is a unique and specialised service for children and young people with Cerebral Palsy and similar conditions and their families. We are the only Centre of its type in Australia and we are recognised around the world for our success in working with children with CP.
We provide physiotherapy, occupational and speech therapy to children as well as helping them to access essential equipment they need in their daily lives. Every single child who attends CPEC no matter how severe their disability learns to communicate. If you are switched on but can't tell others what you feel or need life can be very frustrating. Learning to communicate is life changing.
It currently costs $34,000 per child per year to receive the much needed “Learning for Life” education programs from CPEC. The Government only funds $7,900 of this so we rely on generous people making donations to help keep us operating.
Our kids are inspiring overcoming obstacles to perform everyday activities, we need your support to help them live as independetly as possible.
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