Chanse C.
Age: 9 Years | Bronchoscopy
Layla’s Story
- Name: Layla G.
- Condition(s): Batten Disease
- Age at Treatment: 4
- Age Today: 14 Years
Layla was born healthy and beautiful. As she grew, Layla achieved milestone after milestone, singing her ABC’s, counting and playing. She was smart and full of infectious energy. Her parents, Kerry and Maria, were joyful watching Layla and her big brother Maddux spend time together. Even Casey, the family dog, joined in, always giving Layla kisses to make her smile.
When Layla was two years old, she began having trouble with speech. One year later, she had her first major seizure. Following multiple seizures and medications, Layla was diagnosed with epilepsy. There was strong hope that she would outgrow this diagnosis. But she didn’t. Layla’s seizures worsened, and her ABC’s and 123’s were becoming more and more difficult. So Layla was referred for genetic testing.
“We would have never expected or imagined the news we received on Thursday, October 9th, 2014. Our daughter; the princess, the future bride, the dancer, the ballerina, the soft ball player, the honor roll student, the light of her daddy’s eyes, the queen of her household, the little sister, was diagnosed with a rare genetic disorder known as Late Infantile Batten disease. Batten disease is a rare, fatal autosomal recessive inherited disease of the nervous system and is so rare, it’s estimated that the chances of Layla inheriting this particular mutation is 1:2,000,000,000,” says Layla’s father, Kerry. “Nationwide Children’s means hope for our family,” he adds.
As a terminal neurological disease, Batten disease involves cognitive impairment, loss of developmental milestones, and epilepsy. Sight and hearing may also be impaired. The multidisciplinary team at Nationwide Children’s includes pediatric neurologists, pediatric nurse practitioners, registered nurses, social workers and genetic counselors. Additional consultations are available from pediatric cardiologists, pulmonologists and gastroenterologists. In 2010, Nationwide Children’s became one of only a handful of organizations in the United States designated as a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), the largest research and support organization in North America.
Layla’s family moved from Woodstock, Georgia to Columbus, Ohio in December 2014 to be close to Nationwide Children’s where Layla is under the care of pediatric neurologist Emily de los Reyes, MD, the lead clinician for Batten Disease at Nationwide Children’s. Layla’s father still works in Georgia and travels back and forth so he can spend as much time as possible with their family.
Today, Layla is six years old. She loves My Little Pony, Peppa Pig, Dora the Explorer, Mickey Mouse, and other Disney shows and characters. She adores her big brother who is always looking out for her. Please join Layla at her mile at the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon as she cheers on the participants knowing they are doing so for her, and for other kids like her.
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