Annual event heightens awareness of Rett Syndrome, a genetic disorder affecting brain development in girls
Around the time Julia Miller turned a year old, her parents noticed she was starting to miss developmental milestones. Once a doctor’s appointment revealed her head circumference had plateaued, it was recommended Julia see a neurologist.
“We started the journey,” mom Tarah Miller said, “and found a neurologist over at CHOP. They did a bunch of genetic testing.”
Six months later, Tarah and her husband David had a diagnosis for their daughter. Julia had Rett Syndrome, a rare genetic neurological disorder primarily affecting girls. The Voorhees family had never heard of the disorder.
“I obviously had to go home and do my research,” Miller said.
As a baby, Julia was first developing typically. She was able to crawl. She would cruise around the couch, holding on as she took step after step. She had typical baby babble words — mama, dada. Rett Syndrome then robbed her of this development.
“You gain things, but you tend to lose everything you’ve gained. Once you start to regress, you regress. That’s one of the hardest parts with Rett Syndrome — seeing your child lose abilities they once had,” Miller said. “It’s also so tough on them.”
Julia is now 12 and is unable to walk, talk, communicate or use her hands. She is on medication for seizures and will be having spinal fusion surgery in August. She is 100 percent reliant on her family.
“(Julia) understands. She’s trapped inside her own body,” Miller explained. “Her brain won’t let her do what she wants to do.”
After a few years, the Millers started to build connections in the Rett Syndrome community — beneficial to both Julia and her family, which includes siblings Zach, 17, Lilah, 9, Tessa, 7, and Olivia, 15 months.
Miller also discovered Girl Power 2 Cure, a nonprofit geared toward supporting families and those living with Rett Syndrome.
“They were so open and took me right under their wing,” she said.
On Wednesday, July 11, the fifth annual Rockin’ for Rett fundraiser will be held at Ott’s Voorhees Tavern to benefit the organization. Tickets are $15 in advance and $20 at the door and include raffles, a Chinese auction, food and drink specials, an indoor deejay and a steel drummer and bass guitarist on the patio. The festivities start at 7 p.m.
“It’s about raising money for Girl Power, spreading awareness and getting the community involved,” Miller said.
Awareness, according to Miller, is key.
“I think there are a lot of people who get misdiagnosed or don’t get diagnosed sooner. Some doctors don’t even know about it. It’s not a common thing,” she said. “You have better odds of winning the lottery.”
Research looks promising for Rett Syndrome, with clinical trials underway to find a cure that will reverse the disorder’s effects. Miller said Rett Syndrome Research Trust — a sister organization to Girl Power 2 Cure — has a Roadmap to a Cure that looks promising.
“They’re doing trials and clinicals with girls soon,” Miller said. “They’re hoping to have a cure within three years.”
For Rockin’ for Rett tickets, visit the event’s Facebook page. A link on the page will direct users to buy tickets. Ott’s Voorhees Tavern is located at 890 Haddonfield-Berlin Road, Voorhees.