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High-tech clinic in rural Amish community helps children with rare genetic disorders

Posted at 7:47 AM, Jul 20, 2023

MIDDLEFIELD, Ohio — One in 10 Americans are diagnosed with a rare disease and half are children.

For their parents, the search for answers and treatment can be time-consuming and costly.

A pocket of the population in Northeast Ohio is at an even higher risk.

Good Morning Cleveland anchor Mike Brookbank found a high-tech clinic in a very unlikely place that is providing hope for patients not only here at home but from around the world.

"I can't talk too much about DDC without getting emotional," said Eli Miller, Executive Director of DDC Clinic.

For Miller, who has two daughters with special needs that require a lot of care, the DDC Clinic in Middlefield, which specializes in rare genetic disorders has been a life changer.

Not only for his family but for countless others often left confused by medical conditions not typically seen.

"These rare genetic disorders that we mostly see here are more specific to the Amish communities," said Miller.

Miller said it's mainly tied to their culture.

"We might marry, you know, even as close as second cousins, third cousins," said Miller.

The clinic was founded by five Amish families looking for a diagnosis and treatment for their children suffering from physical and mental disorders.

"The clinic started with $50," said Dr. Heng Wang, Medical Director of DDC Clinic.

Wang has been a constant at the medical facility for more than two decades.

"Interesting story, interesting journey for me. After 21 years, this clinic become a very important part of the community," said Wang.

What makes the clinic special is that it has its own research lab.

“Identify the mutation in a very short period of time," said Wang.

That speed helps connect children with treatment.

Wang and his staff have named some of the disorders that they helped treat.

“Yes, we did that, a handful of conditions," said Wang.

Its expertise in rare diseases now attracts patients from all over the world.

"From Europe, from New Zealand, from Australia," said Wang.

The DDC Clinic may be small, but the mighty clinic is delivering results typically found in larger towns and cities in a comfortable setting.

"That's huge for the families to come to a place where you know we have Amish curtains in the waiting room. It's like they are walking to an Amish home basically," said Miller.

The non-profit clinic relies on donations to keep serving patients.

A lot of that financial backing Miller said comes from the Cleveland area.

"80-85% of our patients are Amish, but to have the non-Amish community support this in a huge way that they do is pretty awesome to me," said Miller.

Wang is grateful for the support and the chance to help make life better for others.

Wang said his life would be a lot different if he was still working in a traditional academic lab setting, which is what he was doing before he came to the DDC Clinic.

"This is different, I mean, this is meaningful work, and you see the technology make a difference, the children get out from the wheelchair," said Wang.

Wang said he has found his calling. A calling that continues, to keep reaching children and adults living with rare diseases.

"It's one of those things that just, you know, it makes you realize that wow, this is a blessing from God to have this here in the community and I'm just so thankful for it," said Miller.

Miller said he is worried about what other disorders are likely to be discovered decades from now, and he is on a mission to create more awareness within the Amish community.

"These disorders to a certain extent they're avoidable," said Miller.

Miller wants to one day see testing that lets couples know if they are compatible before deciding to start a family.

Up until this point, Miller said many in the Amish community feel is they give birth to a child with genetic disorders that is God’s plan.

"To me, it doesn't mean that you know maybe God has another plan, and maybe part of that plan is educating the community that this is avoidable," said Miller.