By ALESHA CAPONE
HILLSIDE sisters Marlee and Audrey look like ordinary children, but their loving parents live in constant fear of losing the two precious girls.
Audrey, who is nine months old, has an illness called mitochondrial disease, known as Mito.
The girl’s mother, Cristabel Harry, said mitochondrial disease was a genetic condition where cells, which produce more than 90 per cent of the body’s energy, did not function properly – resulting in eventual organ failure and death.
“There’s no cure for mitochondrial disease. It’s pretty much a wait-and-see situation,” Ms Harry said.
“Even if you can pinpoint their specific mutation, you can’t tell how long they might live.
“There’s no way to tell if they will live for six months or 20 years, and in the meantime you just have to keep them as healthy as you can.
“I think at the start I was like, ’Oh my God, my child is going to die’.
“But now I do see a benefit, which sounds funny, but it has given me and my husband Heath an appreciation of every day.”
The girls’ neurologist believes Marlee could also have Mito, although tests have not confirmed the exact type of genetic mutation she has.
Now two-and-a-half-year-old, Marlee underwent physiotherapy while younger so she could learn to walk.
Ms Harry said at 12 weeks old, Audrey began displaying worrying symptoms and in July had a seizure.
Her parents rushed their daughter to hospital and afterwards they found out she has Mito.
Five weeks after her first seizure, Audrey had another one. She turned blue and stopped breathing.
“It’s a vision I will never forget and the memory still brings me to tears,” Ms Harry said.
Since the Mito diagnosis, Ms Harry has been on a mission to raise awareness of the illness that affects one in 3500 people.
“I will move heaven and earth to find a cure for my child, and everyone else, affected by this disease,” she said.
Alongside a friend from the Australian Mitochondrial Disease Foundation (AMDF), she is organising a Fit For Life fund-raising walk next year.
Marlee’s creche, the Goodstart Early Learning Centre in Sydenham, will also have a fund-raising raffle and Pyjama Day for the AMDF on Thursday.
See amdf.org.au or https://stayinbedday2013.everydayhero.com/au/cristabel for more information.
