Glenmore Park: Elliott family runs for cure of neurofibromatosis
Libby Elliott’s life changed five years ago when she was diagnosed with a rare genetic disease. Her family will raise funds for a fourth year to help fund a potential cure.
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Libby Elliott was just four years old when a regular optometrist appointment for a ‘lazy eye’ would change her life forever.
The optometrist referred Libby to an ophthalmologist, who ordered an MRI when he knew something wasn’t right.
The MRI returned a diagnosis of neurofibromatosis 2 (NF2), a genetic disease which causes benign tumours to grow on nerves for balance and hearing.
Since that diagnosis, the Elliott family, who live in Glenmore Park, have used the Cupid’s Undie Run to help raise funds for the Children’s Tumour Foundation of Australia.
They have already raised more than $6000 for the March 22 event, which is held in numerous locations around Australia.
Libby’s mum Jen said support was down this year due to bushfire relief, but had been growing steadily since her first diagnosis.
“It started off with just our family in Canberra, but now we have a team of almost 20 people who travel for it,” she said.
“The point of the run is to be comfortable in the skin you’re in, because a lot of kids and adults with NF2 have disfiguring qualities.
“It’s a fun event with a powerful message.
“We have friends who run the Bunbury one in Western Australia, and we’ve had friends run in Townsville and Adelaide.
“We have friends who fly in from interstate to run with us in Canberra as well.”
There is no cure for NF2, and life expectancy sits at 65 years of age.
However, the Elliotts, who also have another daughter, Kaitlyn, 6, will do everything they can to make sure Libby has as normal a life as possible.
“At the moment she’s got hardly any sight in her right eye which was damaged during a tumour removal, and she has another tumour fairly high up on her spinal cord that doctors are anxious about,” Mrs Elliott said.
“They’ve just found something on her left retina as well, and her quality of life will more than likely diminish as she gets older.
“We treat like a normal kid, we’ve always said we’ll do that. We don’t want to treat her as overly special, even though she is, we just want her to experience life like her friends do.
“She looks at herself just like every other kid, and gives everything a go.”
To donate: https://www.cupidsundierun.com.au/my-fundraising/38/cam-elliott