Tayla’s Story

Up until the age of three and a half, Tayla lived a happy and normal life in her beautiful home country of Australia. It was around this time she began having unexplained seizures. After four difficult months of testing and ongoing seizures, Tayla received her diagnosis of Batten disease.

Her parents were devastated. Their beautiful, carefree little girl had a congenital, progressive neurological disease.

Currently, there is no cure. Patients with Batten disease experience cognitive impairment, loss of developmental milestones, epilepsy and sight impairments. But with treatment, physicians and researchers at Nationwide Children’s Hospital are working to slow down the progression of the disease and move closer toward finding a cure.

In April 2017, Tayla’s family packed their house and relocated thousands of miles away from Australia to Columbus, Ohio, in hopes of increasing Tayla’s quality of life and to someday receive news of a cure.

“It was the biggest move of our lives, but the most important one,” says Tayla’s mother, Bobbie. “We have never been more impressed by the professionalism, care and support that the staff and doctors provide at Nationwide Children’s. It is an amazing facility and we are so lucky to have this opportunity.”

Nationwide Children’s is a designated Center of Excellence by the Batten Disease Support and Research Association (BDSRA), the largest research and support organization in North America for families that have children with Batten disease. Chosen because of its clinical and research history with the disease and its ability to provide comprehensive care for these unique children, Nationwide Children’s is one of only a handful of organizations in the U.S. with this designation.

Tayla and her family visit the hospital every two weeks for treatments and professional services. When Tayla’s older brother Kai comes along, he loves visiting the Sibling Clubhouse, a special place for preschool and school-aged children to play, learn and cope while their siblings are in the hospital.

Although she has an enormous battle ahead of her, Tayla is a beautiful, vibrant, loving five-year-old girl who doesn’t let anything stop her from lighting up the room with her smile – especially if there’s music playing that she can dance along to

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Up until the age of three and a half, Tayla lived a happy and normal life in her beautiful home country of Australia. It was around this time she began having unexplained seizures. After four difficult months of testing and ongoing seizures, Tayla received her diagnosis of Batten disease.

Her parents were devastated. Their beautiful, carefree little girl had a congenital, progressive neurological disease.

Currently, there is no cure. Patients with Batten disease experience cognitive impairment, loss of developmental milestones, epilepsy and sight impairments. But with treatment, physicians and researchers at Nationwide Children’s Hospital are working to slow down the progression of the disease and move closer toward finding a cure.

In April 2017, Tayla’s family packed their house and relocated thousands of miles away from Australia to Columbus, Ohio, in hopes of increasing Tayla’s quality of life and to someday receive news of a cure.

“It was the biggest move of our lives, but the most important one,” says Tayla’s mother, Bobbie. “We have never been more impressed by the professionalism, care and support that the staff and doctors provide at Nationwide Children’s. It is an amazing facility and we are so lucky to have this opportunity.”

Nationwide Children’s is a designated Center of Excellence by the Batten Disease Support and Research Association (BDSRA), the largest research and support organization in North America for families that have children with Batten disease. Chosen because of its clinical and research history with the disease and its ability to provide comprehensive care for these unique children, Nationwide Children’s is one of only a handful of organizations in the U.S. with this designation.

Tayla and her family visit the hospital every two weeks for treatments and professional services. When Tayla’s older brother Kai comes along, he loves visiting the Sibling Clubhouse, a special place for preschool and school-aged children to play, learn and cope while their siblings are in the hospital.

Although she has an enormous battle ahead of her, Tayla is a beautiful, vibrant, loving five-year-old girl who doesn’t let anything stop her from lighting up the room with her smile – especially if there’s music playing that she can dance along to

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