Katherine is an Amish mother. Wearing a blue dress and a black bonnet she holds a baby in one arm and with the other, ushers children into the door that have just come home from school.
Katherine: I have nine children. I had 10. Our oldest one passed away with the same disability that Owen has, seizures, feeding tube.
Owen is eight years old. But looking at him as he lays in his crib, he looks more like a four- or five-year-old. He has extremely low muscle tone and he can't control his movements, often having seizures. Owen has trouble breathing. His lungs frequently fill with mucus. He cannot see and can't take any food by mouth.
Katherine: Owen here needs a feeding pump, aerosol machine, and his suctioning machine for suctioning when he coughs because he can't get his own mucus out.
Four of Katherine's nine children are severely disabled but no one knows exactly why. Katherine's story is similar to that of many other Amish families. Children are born appearing healthy but after several months, they begin exhibiting a wide variety of symptoms, eventually developing severe disabilities.
Katherine: The hardest part is accepting it.
Geauga County is home to the fourth largest Amish community in the nation. Most of the people living here are descendants of approximately 200 families that founded the Geauga settlement. That means recessive genes are being passed through generations, increasing the amount of genetic defects occurring in children in the area. Before last year, Katherine would have to pay about $70 to $80 for an hour-long cab ride to get her children to Cleveland for medical attention. But now she can access help by taking a short buggy ride in town.
Michelle Szoradi: It's a very home setting where the bedrooms have been changed into exam rooms, the kitchen area has been changed into an administrative area. We have a smaller exam room, which we're going to put a pediatric exam table in with a digital scale.
Michelle Szoradi is showing off the Das Deutsch Center. She's the clinic's coordinator. Amish craftsmen transformed the ranch-style house into a medical facility. It's located right off of a paved buggy path on Ohio 528. The DDC Clinic was formed through a collaboration between the Amish and non-Amish communities. It's a non-profit outpatient clinic and research facility focusing specifically on children with inherited or metabolic disorders. Before moving into the renovated house that will now serve as the clinic's home, Szoradi and medical director, Dr. Heng Wang, shared a small space at a local doctor's office.
Michelle Szoradi: In the year that we've been operating we have now approximately 90 patients and the doctor has done over 400 house calls. And in that time period we have found a rare disease called prolidase deficiency and until now there has been approximately 40 cases worldwide. So, 40 cases since 1968 and we started with one to three cases and now we have five confirmed cases here in this area.
A lack of the prolidase enzyme in the body can lead to things like skin lesions, chronic infections, and mental retardation. Along with prolidase deficiency, Wang has already identified other rare genetic disorders, and that means being able to research and experiment to find successful treatments.
Michelle Szoradi: I would say when we started 19 of our kids had diagnoses. At this point, 67 of our kids have diagnoses.
Wang spends an average of three to four hours with a family the first time he meets a new patient. Wang says many of the children have received excellent care from places like Rainbow Babies and Children's Hospital and the Cleveland Clinic, but he says one specialist often deals with only one aspect of a child's ailment.
Heng Wang: We do need somebody to focusing on those patients and to do, to sit down with family, to study all these cases and to see what kind of disease they have, and what is the treatment.
The Chinese immigrant says ultimately he wants to find preventive measures that will be accepted by the Amish culture. Since most of the DDC patients don't have insurance, the challenge for the clinic's board and staff is to maintain enough funding for Wang to continue his work. The center relies on funding from grants, private donations, and three annual fundraisers. This Saturday the center will hold its Patchwork event, a combination silent and live auction highlighting Amish-crafted furniture and quilts. Wang says he doesn't know yet what kind of disease Owen or Katherine's other children have, but he's assured her that he's working on it.
Katherine: I hope they get some answers for a lot of the parents. If they can't help us in ways, maybe know why.
In Middlefield, Renita Jablonski, 90.3.