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Families gathered for moebius syndrome event

Krystle Wagner • Aug 21, 2017 at 10:00 AM

The Summer Moebius Michigan Getaway event was aimed at helping families whose loved ones live with the moebius syndrome to connect, listen to speakers and enjoy fun activities.

The event took place Saturday at the Grand River Sailing Club in Grand Haven.

About 70 people had planned to participate in the event that Grand Haven resident Heather McCarthy helped coordinate.

McCarthy’s 14-year-old daughter, Melody Perez, was diagnosed with moebius syndrome when she was just 6 weeks old. McCarthy explained that people who live with the syndrome are essentially born with a “paralyzed face” and don’t have facial expressions.

Additionally, some of those afflicted with the syndrome might have “limb abnormalities or Poland syndrome,” according to the Moebius Syndrome Foundation.

Since the syndrome is rare, McCarthy said there aren’t many families nearby to share experiences. She has used social media to connect with other families.

This past Saturday was the third time McCarthy has connected in person with other families. Last year, she arranged a meeting for Michigan families at John Ball Zoo in Grand Rapids. Prior to that, she connected with families during a conference in New Jersey when her daughter was young.

McCarthy said she hopes the families leave knowing they’re not alone and they can count on each other for support. That support and connection is important because they can share their experiences or answer questions, because they might have encountered similar situations, McCarthy said.

“It’s important to have that support,” she said.

During last weekend’s event, Dr. Bryn Webb, a physician scientist and assistant professor at Icahn’s School of Medicine at Mount Sinai in New York, planned to speak about what she’s learned and experienced. Webb is also involved in researching moebius syndrome.

Individuals living with moebius syndrome will also speak.

Throughout the day, families had the chance to win gift cards through raffles. McCarthy said they received many donations from local businesses.

With all of the donations, the event was presented without charge to participants.

“We appreciate the donations to make it possible,” McCarthy said.

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