Jasmine Kemp loves running around outdoors and watching cartoons. When she wants to be alone, she shuts her bedroom door and hibernates in exasperation — the usual stuff for a teenage girl. But for feeding, bathing, and everything else in her life, 13-year-old Jasmine relies on her parents, Connie and Rufus, and younger sister, Madeline.
It wasn't always this way. Her parents say Jasmine crawled and babbled as a bundle of joy was supposed to do at 12 months old. "She was a wonderful, normal baby up until one year of age. I can remember teaching her all her body parts and listening to her sign and recite nursery rhymes," her mother, Connie, says.
But soon after, Jasmine started to change. She began to move her hands as though lathering them under an imaginary faucet. Any sense of balance or muscle coordination she had developed abruptly halted and then regressed. She developed bizarre rituals like climbing backwards down stairs, and even stopped saying the few words she knew. Her failure to flourish snatched away what Connie loved most — hearing her only child say, "I love you, mama."
Hospital visits and consultations with family doctors offered no answers to the mystery. Jasmine's sudden personality change, loss of motor skills, and inability to communicate led the family pediatrician to diagnose her as autistic. As years went by, however, Jasmine's parents still did not believe her symptoms matched her diagnosis. "This illness just appeared out of nowhere and was devastating. We just knew she didn't have cerebral palsy and that she wasn't autistic — something just wasn't right though," says Connie.
A Devastating Disease
By toddlerhood, Jasmine had slipped away to a place her mother and father could never reach — a place few doctors could even understand. That is, until the Kemps visited The Blue Bird Circle Rett Center at Texas Children's Hospital, the largest and most comprehensive center in the United States that specializes in the diagnosis and care of patients with a little-known disorder called Rett syndrome. A genetic test confirmed that Jasmine had this rare and degenerative neurological disease.
Rett syndrome is caused by a defective gene that occurs almost exclusively in girls. It manifests in a sudden and dramatic decline in physical and mental capabilities at around 12 months, and its debilitating symptoms include seizures, irregular breathing, and more. In most cases, the girls are unable to speak or move normally. The disease is so devastating because it ravages every system of the human body: nervous, digestive, skeletal — not one area of the body doesn't suffer from its effects.
Finding Answers and Support
Fortunately for the Kemps, The Rett Center is one of the few places in the world where patients receive an accurate diagnosis and access to a full range of multi-disciplinary care necessary to deal with Rett syndrome's breadth of symptoms. The Center combines innovative techniques such as speech therapy with alternative means of communication, music therapy, hydrotherapy, even horseback-riding therapy, along with traditional physical and drug therapies — all in the service of extending the life expectancy and improving quality of life for children like Jasmine.
"We didn't know or understand what Rett syndrome was until we came to Texas Children's. There, we finally found out that our daughter had it and we could deal with it and she could get treatment," says Connie.
Where Breakthroughs Begin
Texas Children's is also home to the world's leading research team dedicated to unraveling the genetic mystery of the disease — and offering new hope to families like the Kemps. In 1999, a team led by Dr. Huda Zoghbi, Texas Children's pediatric neurologist, professor of Pediatrics at Baylor, and Howard Hughes Medical Institute investigator, made a breakthrough discovery: they identified the defective gene that causes Rett syndrome.
"Now that we know the problem gene," Zoghbi explains, "we can explore the possibility of developing treatments that could be given in early infancy before symptoms appear." Researchers at the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital will continue to build on Zoghbi's research in hopes of developing new treatments for Rett Syndrome and other neurological disorders.
Learning about Love, Living with Hope
"I am so grateful for all of the good they are doing at Texas Children's to learn more about Rett syndrome, because there are many possibilities out there, and if anyone can find a cure it is Texas Children's Hospital," says Connie Kemp, who is now in her fourth year working as an employee relations specialist in Human Resources at Texas Children's.
"Jasmine is everything to us, and we are so blessed by God to have her and Texas Children's in our lives," she said. "She is such a blessing in our lives and has taught us the true meaning of love for a child. Whether a cure comes in our lifetime or not, I will always love Jasmine just the way she is."
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