Stevenson Elementary School kindergarten student Tayla Riddle had a huge smile on her face Oct. 21 as she cheered on the participants in the 39th annual Nationwide Children's Hospital Columbus Marathon.
"She loves to cheer and a lot of the runners gave her a high five as they passed by her," said Tayla's mother, Bobbie Riddle.
Tayla, who was diagnosed in 2016 with Batten disease, was serving as the Patient Champion at mile 20 along the marathon route.
It marks the third consecutive year a Grandview Heights Schools student has been selected to be a Columbus Marathon Patient Champion.
But as Tayla cheered on the runners, about 200 Grandview students, teachers and community members were on hand to show their support for Tayla.
For several years, youngsters with Batten disease going through clinical trials at Nationwide Children's Hospital have been living and attending school in Grandview.
The hospital has provided housing for the families at Grandview Yard, which is located with the school district.
Batten disease is one of 50 disorders involving genetic mutations that disrupt cells' ability to dispose of waste.
A patient's body does not produce the enzymes needed to break down the waste material.
In Tayla's case, the symptoms of the disease emerged when she starting having seizures at age 3 1/2, Bobbie Riddle said.
"They started out occasionally, then weekly, then she was having (seizures) three or four times a week," she said. "As a parent, you just feel helpless watching your children go through this."
Riddle and her husband, Jay, brought their daughter to doctors near their home city of Sydney, Australia.
"At first, everyone thought it was epilepsy," Riddle said. "We were really lucky, though, because we found a doctor who had treated a patient with Batten disease, and when she looked at Tayla's MRI, she recognized what the true cause of the seizures were."
Only about 10 cases of Batten disease have been diagnosed in Australia, she said.
The Riddles were determined to find the best treatment possible for their daughter, so the family, including Tayla's older brother, Kai, who is now 8 years old, pulled up stakes and moved to the Columbus area in April 2017.
"We were so lucky again," Riddle said, when Tayla qualified for one of the few available slots in the clinical trial at the hospital.
The clinical trial involves treatment with a drug that produces enzymes to replace those that have been lost, she said.
There is no cure for Batten disease. Children with the disease typically die between the ages of 6 and 12.
But the treatment has brought encouraging results for Tayla, who will turn 6 in December, Riddle said.
"She hasn't had a seizure since she started the treatment," she said. "We know she is able to do things now that she wouldn't have been able to do without this treatment.
"Tayla loves dancing to music and she loves going out to the playground," Riddle said. "If she can climb something, she's going to want to climb it. Her speech is limited, but she can talk some."
The treatment Tayla's receiving "is giving us hope, and that's something that was in short supply before," she said. "Our ultimate hope is there will be a cure someday."
Seven youngsters with Batten disease live in Grandview, with five attending Stevenson, one enrolled in pre-kindergarten and one home-schooled, Stevenson Principal Angela Ullum said.
The district includes the students in regular classroom activities and their classmates are eager to volunteer to accompany them to the playground, play with them during recess or eat lunch with them, Ullum said.
"I think it teaches them about compassion and empathy and the importance of accepting other people who are on the surface different from you," she said. "I think children are great at instinctively looking beyond whether someone has a medical condition or a different skin color and recognizing we are all basically the same."
The amount of support and caring students and Grandview community members show for Tayla and the other Batten disease patients in the community is "inspiring," chief academic officer Jamie Lusher said.
"This is our third year with a Patient Champion, and I'm always so inspired by the champions' courage and seeing the way our students and the community hold them near and dear to their hearts."
"We've been overwhelmed by the support we've received from the Grandview community," Riddle said. "From the time we moved here, we've been welcomed and have received so much love and support. Grandview's a truly special place."
Nationwide Children's Hospital also has been "beyond amazing," she said.
On marathon day, the family raised about $6,000, which it donated the hospital, Riddle said. The funds were raised through T-shirt sales and donations from community members.
The family is supporting an effort to have the prescription medication used at Children's Hospital approved in Australia. The drug was approved in April 2017 for use in the United States.
"We're hoping the drug can be approved in Australia so that at some point we can return home," Riddle said.