October is a month that spreads awareness for a lot of diseases — AIDS, breast cancer and lupus, to name a few. These are diseases most people know about, however October is also a month to spread awareness for a little known disorder called Rett Syndrome.
Tarah Miller of Voorhees wants to spread the word about her daughter Julia, 8, who is affected by the disorder. All this month, Tarah is spreading the word about Rett Syndrome and raising funds for a half marathon she will be partaking in where the proceeds will go toward Rett Syndrome research and finding a cure.
“October is Rett Syndrome Awareness, but to me every month is awareness month,” Tarah said.
Rett Syndrome is a debilitating neurological disorder that predominantly affects females; though males can have it, most do not live after birth. It is caused by a single gene mutation in the X chromosome that leads to underproduction of an important brain protein. Baby girls are born “normal,” but begin to lose acquired skills between the ages of 1 and 3. Rett Syndrome is as prevalent as Cystic Fibrosis, ALS and Huntington’s. Another little girl is born with Rett Syndrome every 90 minutes.
“It can happen to anyone; it can affect anyone,” Tarah said.
When Tarah found out her daughter had the disorder, she had never heard of it. But once she found out Julia had it, she was devastated.
“We were doing a regular checkup and the doctor noticed her head circumference wasn’t growing. We went to see a neurologist and got testing done, that is how we found out she had Rett Syndrome,” Tarah said.
Rett Syndrome is the leading genetic cause of severe impairment in girls — most cannot speak, walk or use their hands. Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
“It’s very devastating. You can’t walk or talk, 100 percent trapped inside of your body. She is there, but can’t communicate and get it out,” Tarah said.
Julia is in a wheelchair, but she goes to school where she is in special needs classes and has speech and physical therapy. However, despite the disorder and its limitations, Julia still is able to do quite a bit. She loves going to school, hanging out with her siblings, watching cartoons, listening to music and interacting with people. Though Julia can’t walk or talk, she can communicate through her eyes.
“They say your eyes are the gateway to your soul, and her eyes say so much. That is how she communicates. Not just with emotion, you can hold up pictures or ask her a question and she’ll answer with her eyes. Hopefully, in the future, we get a Tobii, which is an eye gaze system,” Tarah said.
From Nov. 14–16, Tarah will be running with Girl Power 2 Cure, a 501c3 nonprofit organization dedicated to raising awareness and funds for treatments and a cure for Rett Syndrome, in the Avengers Super Heroes Race Weekend in Disneyland for Team Julia. Team Julia is the top team so far, raising $6,678 for the event.
Part of that donation was from a benefit Tarah and her family held in June called Rockin’ for Retts. Hosted yearly in Cherry Hill at the Coastline, there are live bands, Chinese auctions, a 50/50, drink specials, food and more. Donations and entry fees all go toward research and finding a cure.
Rett Syndrome is a potentially reversible disorder. Research has proven once protein levels are back to normal levels, symptoms subside. However, how this can be done is still being determined.
To find out more about Rett Syndrome and Julia, go to www.girlpower2cure.org/Home.aspx or girls.girlpower2cure.org/julia. If you wish to help find a cure for Rett Syndrome, donate toward the cause and Team Julia at avengers.teamgp2c.org/goto/juliatarah.
