One of 500 boys with Hunter Syndrome and his family win award – Montgomery Newspapers

Posted: October 4, 2020 at 2:04 pm

The Lieber family, based in Roxborough, was recently presented the Communications Champion Brighter Futures award by Philadelphias Department of Behavior Health and Intellectual disABILITY Services in honor of their leadership in the community and dedication to their son Ethan.

Ethan was diagnosed as deaf or hard of hearing at age 2. His family immediately sprang into action, seeking out all that he would need to be successful. They enrolled him in Clarke Philadelphias Early Intervention Program where he began his journey toward learning to listen and speak.

The Liebers wondered why Ethan had a hearing loss unlike any other family members and decided to participate in genetic testing where they learned Ethans hearing loss was likely a component of Hunter Syndrome.

Ethan is one of 500 boys in the United States with Hunter Syndrome, an extremely rare genetic disease caused by a missing or malfunctioning enzyme. Shortly after Ethan was diagnosed, the Liebers expanded their advocacy efforts nationally in partnership with Sock-it 2 Hunter Syndrome Foundation. They remain committed to advocating for life-changing research funds and are dedicated to supporting families on a similar path.

Even in the toughest moments, the Lieber family perseveres in supporting their son Ethan so that he can just be a kid, explains Judy Sexton, director of Clarke Schools for Hearing and Speech in Philadelphia.

Ethan uses hearing aids and is a recent graduate of Clarke Philadelphia where he was taught the listening, learning and spoken language skills needed to succeed alongside his peers with typical hearing. During Ethans four years at Clarke Philadelphia, his dad, Steve, was a regular in the classroom where he created STEM with Steve, a science-based curriculum that presented an engaging learning experience for Ethan and his friends at Clarke.

This fall, Ethan is continuing his academic journey in kindergarten at Stratford Friends in Newtown Square.

"The Liebers continue to embrace the support of Clarke, the Hunter Syndrome community, Childrens Hospital of Philadelphia (CHOP) and their Jewish community, explains Jeana Novak, early intervention coordinator at Clarke Philadelphia. Through their unending optimism, they have infused each of these groups with the belief that every day brings something to celebrate and something to share.

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One of 500 boys with Hunter Syndrome and his family win award - Montgomery Newspapers

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