‘She talks with her eyes’
Published 12:00 am Saturday, October 27, 2007
MURFREESBORO – Every conversation Judy Parker has with her daughter, Allison Joyner, is silent on one side.
Though Parker can express her love to her daughter verbally, Allison, who lives with Rett Syndrome or RS, answers that affection in her own way.
“She talks with her eyes,” said Parker.
As Parker and 12-year-old Allison sit on a sofa in their living room, one can see those silent conversations pass between mother and daughter.
Parker is blind to the condition her daughter lives with. It’s a unique view point only a mother and a person who has a loved one with RS can understand.
To outsiders a quick observation tells them Allison is different as she sits quietly, wringing her hands and grinding her teeth, only a few symptoms of RS, which is found almost exclusively in girls.
Many observers may react with fear and ignorance, but that’s something Parker has set out to change through education and awareness. She noted that October is Rett Syndrome Awareness Month. She also hopes to help those who have children with RS or may have been misdiagnosed.
According to the International Rett Syndrome Association (IRSA) web site, RS is a neurological/neurodevelopmental disorder caused by a mutation in MECP2 gene on the X chromosome.
The MECP2 gene is responsible for turning off or regulating the activity of other genes. RS causes this turn off/regulatory mechanism to fail, making other genes function abnormally.
The condition effects brain maturation, resulting in the slowing down of communication skills and apraxia, the inability (or reduced ability) to program the body to perform motor movements. Seizures and irregular breathing patterns are also known to occur in individuals with RS.
RS can be found in all races and ethnic groups around the world. It is mostly found in females because of two reasons: a sporadic condition secondary to new mutations, these new mutations occur predominantly in the father who can only transmit his X chromosome to a daughter and that females have two X chromosomes versus the X and Y found in males.
Allison’s story begins like many with RS—normal development.
“She had a rough start, but after a week she was fine,” said Parker about her daughter’s birth in 1995.
Allison grew normally for the first year. She walked, talked, sat on her tricycle and played with toys. She took a particular interest in books, a fascination Parker said is still with Allison.
“At 18 months we noticed the hand wringing,” said Parker. “It all started to escalate.”
The five-year guessing game began for Parker, her family and the various physicians visited. At one point it was believed Allison was deaf and then she was thought to have Autism.
But a test for RS in March of 2002 revealed Allison had the mutated MECP2 gene. That same year Allison began to have seizures.
Parker sought out ways to learn about her daughter’s disorder. With no one else she knew of in the area with RS, Parker turned to the Internet, finding IRSA, a web site that offers knowledge about the disorder and family support along with other network services.
She’s set up a website for Allison, telling her story in first person, thus giving her daughter a voice.
Parker has also involved herself in the Rett Syndrome Research Foundation (RSRF) raising money through Phantom Tea where individuals can make a donation in the name of a person living with RS.
Last year, Parker’s effort collected more than $400 for the foundation.
Today, Allison lives a normal life like any girl with RS. She enjoys riding on her family’s ATV, playing with her two dogs (a Shih Tzu will soon be added to the family) and attends school at Riverview Elementary School.
“She goes to visit her daddy,” said Parker, referring to Allison’s biological father, Chuck Joyner.
Parker said Allison speaks a few words and her seizures are now under control, although she does have the occasional “spell,” which according to her doctor is not seizure related.
It’s that strong support system within her family, which also includes siblings and stepfather, Larry Wayne Parker, that helps Allison live an active life.
Others also promote this, including Caregiver Carol Tomlin, who helps Allison in school and at home. Every day tasks like brushing her hair and teeth are things Tomlin works on with Allison.
Parker said her daughter’s teachers, Mrs. Barnes and Mrs. Gatling, have been a tremendous support as well, reaching out to Allison and understanding RS.
It’s a tolerance Parker wishes she could teach the world.
“They’ve got to be able to accept her for who she is,” she said.
Parker said if she could take on any the symptoms that come along with her daughter’s condition she would.
“But I wouldn’t change her,” she said.
For more information about RS visit www.rettsyndrome.org or www.rsrf.org.
To learn more about Allison visit www.rettangels.org/members/allison.