9,500 Miles to Hope | Tayla’s Batten Disease Journey

Описание: Hope. It’s what brought the Riddle family to Nationwide Children’s Hospital from 9,500 miles away. Diagnosed with Batten disease in Sydney, Australia, Tayla’s parents were told there was nothing that could be done. Their daughter would slowly lose the ability to walk, talk, see and swallow and she would likely die before she turned 12 years old. It was an outcome her parents refused to accept. They started to explore what clinical trials and options might exist from a global standpoint. That search led them to Dr. Emily De Los Reyes at Nationwide Children’s in Columbus, Ohio where new research hinted at the first sign of real hope for children with Batten disease. Through clinical trials and approved therapies, Dr. Emily and her team have successfully slowed the progression of the disease. One of only four centers of excellence in the United States, Dr. Emily oversaw the US clinical trial site that led to the first treatment ever approved for Batten disease. Enzyme replacement therapy delivered directly to the brains of children with CLN2 Batten disease has proven to significantly halt the devastating deterioration caused by disease. It means children like Tayla will have more time to just be children while the world continues to work on a cure for them. For Tayla’s parents, it was hope found at the end of a 9,500 mile journey.

Connect with a specialist: http://bit.ly/2kAnZu5
Inside Batten Disease Clinic: http://bit.ly/2mBCCxS
Meet Dr. Emily De Los Reyes: http://bit.ly/2kRzcGR
Learn more about life with Batten disease: http://bit.ly/2kU7CZA