- Associated Press - Monday, October 2, 2017

JONESBORO, Ark. (AP) - While Lauren Kitchen may not be able to speak words to her parents and siblings, her mother says the fifth-grader at Westside Middle School can still communicate her needs and wants.

“She talks with her eyes,” LA-Konya Kitchen said. “She can just give us looks and let us know she’s wanting something or if she’s not happy.”

The Jonesboro Sun reports Lauren has Rett syndrome, a postnatal neurological disorder that occurs almost exclusively in girls. The disorder renders girls like Lauren unable to speak, results in seizures and in some cases girls lose their ability to walk. Thankfully, her mother said, Lauren hasn’t had as many seizures as other children with the syndrome.

Kitchen began noticing Lauren’s problems at about 18 months, she said. Lauren began losing control of her motor skills and wasn’t talking. The clear sign of Rett’s, hand-wringing, was prevalent, leading to the diagnosis.

Lauren needs assistance on a daily basis, Kitchen said.

“It’s been heartbreaking at times,” Kitchen said. “She’s just locked inside.”

Lauren will cry and make sounds to express her feelings, Kitchen said. It’s not something she and others who suffer from Rett’s can control, either.

“I get her up; I get her dressed to put her on the bus,” Kitchen said. “When she gets home from school, I usually don’t have much free time until she goes to bed.”

She’s in a special needs class at Westside, which Kitchen said has been great.

“They’ll have all the kids wear purple (the color associated with the disease) one day, and they’ll let me send a flower home with all of the kids,” Kitchen said.

However, Lauren isn’t defined by her diagnosis. She laughs and is usually happy, Kitchen said. She enjoys fish tanks and, coming from a musically-inclined family, she has a soft spot for Bruno Mars. Yet, the Filipino superstar isn’t her favorite artist. That honor belongs to her 18-year-old brother, Alex, who plays guitar.

“She is Alex’s favorite person in the world,” Kitchen said. “He plays music, and she is his No. 1 fan.”

Alex helps his mom when she’s not sure what Lauren needs.

“Anytime I can’t figure out what’s wrong, he picks up his guitar,” Kitchen said.

Lauren has two other siblings: Konner, 15, and Lilly, 12. Lauren’s dad Rick is “great” with her, her mom said.

The family is hopeful more research will continue to be done. Kitchen said she will be able to meet up with other families with children suffering from Rett’s in the future. A Facebook support group is also immensely helpful, she said.

Clinical trials on mice suggest neurological symptoms may be reversed, she said. Human trials have begun, giving hope that Rett’s can be cured.

Gov. Asa Hutchinson pronounced October as Rett syndrome Awareness Month.

“We should continue our efforts in bringing awareness to the medical community, therapists, teachers, caregivers and the general public as well,” Hutchinson said in his proclamation. “We should support researchers who are dedicated in finding a cure for Rett syndrome.”

While the future is unknown, Kitchen said she’ll continue to be a voice for Lauren.

“She’s my heart,” Kitchen said. “I’m her voice. I want to do what I can to raise awareness for her.”


Information from: The Jonesboro Sun, https://www.jonesborosun.com

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