Three years ago the Emanuel family had their lives turned upside down by a disease that, at this point in time, has no cure.
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At age 9, Charlotte Emanuel began showing signs of a degenerative neuro-muscular disease that, after a lot of tests, would only be diagnosed as Friedreich Ataxia (FA) a year-and-a-half later.
Now 12, the Nelson Bay girl is living with the rare disease that affects her reflexes, balance and speech. However, it has done nothing to dampen Charlotte’s spirits, or her family’s hope to find a cure.
“We’re okay because so much is in the pipeline, research and trial-wise,” Charlotte’s mother, Jacqui Emanuel, said.
“There are so many other diseases that aren’t in the research and development stage like FA is at the moment. But we have a long way to go to get trials to Australia and across the line.”
To help fund the FA research currently underway, the Emanuel’s and staff from Charlotte’s school, St Philip’s Christian College, will hold a ball at Wests Nelson Bay Diggers on August 3.
In March, about 40 staff members from the Salamander Bay school walked 33km from Stockton to Birubi Beach to raise awareness about AF.
“Charlotte is such a good kid,” St Philip’s teacher Scott Sinclair said. “When we found out the severity of it [FA] we wanted to do what we could to help. The family supports the school; we wanted to support the family.”
Money raised at the Find A Cure Ball will be donated to the Friedreich Ataxia Research Association, which will be directed at three “research priorities” including advancing gene and stem cell therapy and improving clinical outcomes.
Tickets to the ball, available from the club, cost $110 which includes a two course meal, drinks and entertainment. There will be raffles and auctions on the night, which kicks off at 6.30pm.
Businesses wishing to add their support to the ball can do so by emailing Mrs Emanuel at jacqui.emanuel@icloud.com or Mr Sinclair at scott.sinclair@spcc.nsw.edu.au.