A family encourages fighting Rett Syndrome through research. Vanessa Bolano reports.
It’s a disorder that affects 1 in every 10,000, and is almost exclusive to girls, but researchers are on the cusp of some promising research that could lead to treatment or even a cure for both Rett Syndrome and other related disorders including autism and schizophrenia. Vanessa Bolano travels to the North Shore for the story.
If Lauren Favaloro could talk what would she say?
“She’s got lots to say, but unable to speak,” says Lauren’s mother Linda Favaloro.
She’s unable to speak because of a developmental disorder that has also robbed Lauren of the use of her hands. At age five, Lauren became one of the first children in the U.S. diagnosed with Rett Syndrome.
“Between two and three years old she started to regress. She stopped showing any interest in toys, she lost eye contact, she didn’t really look at you in the eye and she stopped responding to her name, and then her hands sort of became useless,” says Linda.
Today Lauren is 33-years-old. She lives with her parents in Mandeville.
Her father Wesley says, “She sits down in the morning and reads the newspaper with me and talks about the Saints. Thinks about the Saints!”
Recently there has been promising research. It shows certain drugs can lead to the reversal of Rett Syndrome in animals. The next step would be to find that same progress in people like Lauren.
A cure or treatment for Rett could reverse the effects of other related disorders including Autism, and Schizophrenia. For the Favaloro’s it would unleash their dreams.
“We’re just hopeful one day she’ll be able to talk and tell us what’s going on up there and maybe develop some more self-help skills,” says Linda.
This weekend the Favaloro family will join other families in Baton Rouge affected by Rett in raising funds for research. The fundraiser called “Black Out Rett Syndrome” will feature a concert by country singer Clint Black who lost a niece to Rett.
The event is at the Celtic Media Center in Baton Rouge at 7pm. Tickets are $100 per person. For tickets call 804-519-6231 or click here.