Taking a lead role in Pitt Hopkins Syndrome...
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Sep 05, 2013  |  Vote 0    0

Taking a lead role in Pitt Hopkins Syndrome research

St. Marys Journal Argus

Stew Slater

News editor

At their regular meeting last week, members of St. Marys Town Council got a glimpse into the unique challenges and achievements of a young citizen who has built a profile over the past few years — either accompanying his schoolmates from Little Falls Public School, or accompanying his Mom, accessibility awareness champion Councillor Lynn Hainer.

At the meeting, Councillors unanimously agreed to declare a day, later this month, in honour of the medical condition that Mitchell Hainer has lived with all his life.

The request to proclaim Sept. 18 as Pitt Hopkins Awareness Day in St. Marys came through a delegation delivered by Mitchell’s dad, Rick. Councillor Hainer did not vote because she was absent.

Rick Hainer explained that research into Pitt Hopkins Syndrome has only been ongoing for about 15 years, and only 250 children worldwide are known to have the condition. He estimates there could be thousands of others in which Pitt Hopkins has not yet been diagnosed.

Mitchell Hainer is one of four children in Ontario with the Syndrome, and one of very few with Pitt Hopkins who has the ability to speak.

A group of parents in Canada recently decided to seek the Sept. 18 declaration — so chosen because the condition is defined by an alteration in the 18th human chromosome — as a means of building awareness and encouraging financial support for further research.

“We do believe in a cure,” Rick Hainer said.

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