Guess who made cover of our local news paper?
Music is medicine for Eagle girl with genetic disorder:
by Katy Moeller
When Makita Jones’ daughter needed dental surgery this past spring, the surgical staff asked her to bring along something that would comfort the 6-year-old.
For most kids, a comforting item might be a blanket or a teddy bear. But Brynn Jones is a little different. She has a developmental disorder known as Rett syndrome.
Rett syndrome is caused by a genetic mutation. It radically affects a child’s brain development and function, affecting her learning, speech and motor skills. Children with Rett syndrome experience sudden bouts of screaming and crying that can last hours.
“The only thing that comforts her is music,”said Makita Jones, a 37-year-old mother of four. When Brynn’s big brothers babysit her, they know to play music if she needs soothing.
Jones brought her iPhone to the surgery, and the medical staff piped the music to speakers in the room. Everyone listened to Brynn’s favorite — indie pop singer Mindy Gledhill.
“The surgeon commented to me that they all liked it,” Jones said. ”They said it made them happy.”
Gledhill, who lives in Provo, Utah, was planning a tour of the Northwest and reached out to fans on her blog about coming to Boise. When she heard about Brynn, she agreed to a benefit concert at the Rose Room.
“There’s no award or accolade that I could receive that would make me feel more honored,” Gledhill said from Provo Monday.
The 30-year-old singer has had a busy year. She had her third child in August and she released her fourth album, “Winter Moon: Songs for Christmas.” This month, the TV show “Bones” featured her song “Anchor.”
Gledhill will meet her biggest little fan on Friday, and all proceeds from the concert will go to the International Rett Syndrome Foundation, headquartered in Cincinnati.
Rett syndrome is often misdiagnosed as autism or cerebral palsy. The mutation occurs before birth, but symptoms do not appear until after 6 to 18 months.
Brynn was progressing until she was about 2. But her parents did notice some unusual things.
“She didn’t cuddle. She was almost 1 the first time I was holding her, and she laid her head on my shoulder,” Jones said.
Her ability to verbalize the words she had learned by age 2 began diminishing.
Brynn cannot communicate verbally, and she’s unable to do sign language because of a loss of control over the movement in her hands. Her hands clap together involuntarily and repetitively.
Her family is learning to communicate with her through a special computer that reads her retinas. Her parents can ask her questions, and the computer tells them what she’s saying through what she looks at on the screen.
“We’ve learned her favorite color is pink, and she knows the names of the cartoons she watches.”
Her favorite song is Gledhill’s “All the Pennies.” The lyrics include:
All the pennies in the wishing wells
All the diamonds Tiffany’s could sell
All the riches put together
All the sunny California weather
Could not make me love you any better.
Brynn is a first-grader at Cecil Andrus Elementary School, where she is in primarily special-education classes. She sees a developmental therapist twice a week.
Researchers estimate that Rett syndrome occurs in about 1 in 10,000 to 23,000 live female births; it is a mutation of the X chromosome and very rare in males.
There is no known cure, but at least one drug is in clinical trials.
“In my daughter's lifetime, if she can have more use of her hands and communicate a little more, if she can have more normalcy, that’s going to be a gift,” Jones said.
Despite everything, Brynn is a happy child. She smiles and giggles a lot — exposing a front tooth she lost recently and another ready to go soon.
She loves shopping, swimming (with life jacket), riding therapy horses and spending time with her brothers.
“She loves to be with people. She just looks at you like you hung the moon,” Jones said. “You can’t help but smile or be happy when you’re around her.”
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