One young Cherry Hill student is feeling the love at her elementary school.
Julia Miller, a first grader at Thomas Paine Elementary School, suffers from Rett Syndrome, an incapacitating neurological condition that causes a loss of acquired skills, primarily affecting girls.
Her school has created a Garden of Hope in the foyer to help find a cure for the disorder.
Paper flowers are sold for a dollar and then hung in the garden, Julia’s mom, Tarah Miller, said.
So far, $1,000 has been raised locally.
“They ran with it,” Miller said.
Strength comes in numbers.
“A flower is just more powerful as a garden,” said Ingrid Harding, founder and executive director of Girl Power 2 Cure, Inc. and a native of South Jersey.
Garden of Hope is a campaign through the national nonprofit, which was founded in 2006.
Flowers are being spread throughout the country “garden by garden,” Harding said. “The flower has been a great bridge to showcase the beauty and the hope that lies inside of all these girls.”
Julia, 7, is a student in Dana Hoffman’s special needs classroom.
“This community is so child-centered,” said Paine Principal Susan Weinman in a statement. “When you do something that benefits children, there is always a great response.”
Miller has to find alternative ways to communicate with Julia, including plenty of eye contact.
If Julia needs something, she’ll look at her mom, and, as her parent, Miller will know what to do.
“We take care of her,” she said. “She’s left unable to walk, she cannot talk, (and) she has very low function of her hands.”
As a side effect of the syndrome, she cannot play with toys.
Aside from her issues, Julia is just like any other child her age, her mom said.
“She’s a happy 7-year-old girl,” she said.
The conditions faced range from girl to girl. Some girls can’t sit up without help.
“Each girl is different,” she said.
In doubling her efforts against Rett Syndrome, Miller has been working with the Girl Power 2 Cure group and will be hosting a benefit on Tuesday, June 18 called Rocking for Retts at the Coastline Bar and Restaurant.
Tickets will be sold for $10.
According to Harding, Rett Syndrome is caused through a random gene mutation and affects about 1 in every 10,000 girls.
“Every little girl has equal chance of acquiring it,” Harding said. “It’s not inherited.”
The gene will make a special brain protein. When the protein level goes down, Rett Syndrome occurs.
The syndrome is pointing to being the first curable neurological disorder based on research including a 2007 lab study on mice, Harding said.
Proceeds through the Garden of Hope and other campaigns in the nonprofit fund research to find out how to normalize protein levels in the brain.
As a rare disorder, many families do not receive diagnosis until their children are in their teens.
Girls start to exhibit symptoms after the first year of life, Harding said.
“It just hits,” she said. “They’re literally living trapped inside. They’re mentally OK. It’s more like a movement disorder.”
While the girls cannot speak, they can still make noises.
“They do laugh and giggle and cry and moan,” she said.
Therapy, diet control and environmental factors are all extremely important in hopes to keep the girls from regressing further.
“Their symptoms are fragile,” she said, but the girls are smart, brave and waiting for help.
“It’s possible. This has been reversed in the lab,” she said.
Moms like Tarah Miller keep the cause going strong, Harding said.
“She has just done such a great job making our flower bloom in her area,” she said.
Events take place across the country, with the biggest fundraiser of the year for the group just having taken place in February.
The Disney Princess Half Marathon garnered $250,000 for the cause.
“Every year, we hope it gets bigger,” Harding said.
“This generation of girls could be responsible for curing a neurological disorder,” she said. “We can make this happen.”
To learn more, visit www.girlpower2cure.org. Reach out to Tarah Miller to find ways to become involved either by phone at (856) 425–5324 or by email at [email protected].
