A GLITTERING gala organised by Redlands mum Hayley Rikihana will raise much-needed funds for research into Rett Syndrome.
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The Reverse Rett Brisbane Gala Fundraiser, which will be held in Coorparoo on October 19, will raise money for the Rett Syndrome Research Trust.
The syndrome, which affects girls and women, has symptoms similar to autism, Parkinson's, cerebral palsy, scoliosis and epilepsy.
It is caused by the mutation of the MECP2 gene.
Typically Rett Syndrome has periods of regression, the first occurring at about one to two years old. After developing normally until this age, girls with Rett syndrome will lose the ability to walk and talk.
It means Ms Rikihana's daughter Mia Perrott, 15, needs round-the-clock care.
"Micro-managing every aspect of Mia's health is relentless in order to keep seizures and illness at bay and prolong further regression," Ms Rikihana said.
"Girls with Rett Syndrome suffer immensely when going through puberty and can often scream for hours on end daily, which can go on for years."
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Among the strategies that are part of RSRT's Roadmap to a Cure plan is research into a cure, with one promising area being gene therapy.
"For decades Rett Syndrome was thought to be incurable, until 2007 when the mutated MECP2 gene was reversed in mice," Ms Rikihana said.
"With this approach not being able to be replicated in humans, the advancements in gene therapy have allowed researchers to look at other ways to cure Rett Syndrome and now have in place a strategic plan to see Rett Syndrome become the first neurological condition to be cured."
Ms Rikihana said she admired her daughter's courage and determination.
"Although Mia struggles everyday, she never gives up and continues to give progress her all," she said.
"She is learning to speak with an eye gaze communication device because she cannot communicate using the traditional approaches and she is showing us just how intelligent she is."
The Reverse Rett Brisbane Gala Fundraiser will be held on October 19 from 6.30pm at the Easts Leagues Club, Coorparoo.
Money raised will go towards the Rett Syndrome Research Trust's Roadmap to a Cure campaign.
For tickets, visit Eventbrite.
