Columbus host to only clinical trial in the U.S. for rare disease

COLUMBUS (WCMH) — It’s a rare sickness that you have likely never heard of before, and the only clinical trials for it in the United States are being done in Columbus.

There is no known cure for Batten Disease and less than 1,000 people in the world have been diagnosed with it.

Matty O’Leary is a fun loving six year old with a passion for his family, trucks, and dancing. Lurking in his brain is Batten Disease.

“My husband got the call and said okay and hung up. Then went online and saw what it encompasses and at that point we were devastated,” said his mother Michelle O’Leary.

According to the Batten Disease Support and Research Association, it can cause blindness, loss of motor skills and the inability to speak. O’Leary says most who are diagnosed don’t make it far past their 12th birthday. For mothers like her, the diagnosis didn’t make sense. “We just kept looking at Matty and saying this isn’t him. This isn’t our child. Look at him. He is loving life.”

Doctors pushed them to prepare, and from their home in New Hampshire, the O’Learys began looking for clinical trials, which at the time only happened in Europe. As fate would have it, the FDA approved trials in the states, right here in Columbus.

“We immediately got off of the phone and just started map questing and immediately began to figure it all out,” O’Leary said.

After more than one year of treatment, and some serious miles racked up from traveling from New Hampshire to Columbus, Matty is doing well and his big brother Logan has been with him every step of the way.

“He loves me. Even though he can’t say it, he loves me,” Logan said.

That love is leaving this family with hope that some day, what’s being done in Ohio will lead to a cure.

For more information on Batten Disease or how to donate to the cause, you can contact the Batten Disease Support and Research Association at www.bdrsa.org or call 800-448-4570.

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