Genetic problems among the Amish

the Ohio but their path of the special needs cases like the Miller children the mysterious crippling disease that affects three of these five brothers and sisters has no name and no known cure their father Bob Miller says he realizes there's a crisis in the community which is why he had two other fathers Erwin Coons and Robert Hershberger agreed to break a strict Amish rule that forbids them to appear on camera they sat for an informal interview make the Amish community start talking amongst yourselves about what these diseases are where they're coming from it definitely does yes you don't know anything about what it is that makes it rough take for example the Pilar girls these three Amish sisters were all born with a condition that mysteriously leads to severe mental retardation and a host of physical problems last year doctors figured out that the girls have the gene for something called Coen syndrome only 100 known cases worldwide since then more than a dozen other cases of Cohen's have been discovered right here in Ohio Amish country is a de colon disease calls and colon disease that nobody knew was around here and he followed what 20 20 to 30 cases in this area now new is there a cure for it not a cure do they know but does it help just having a name it sure does because for so many years the Amish have had no names for these disorders it was a mystery why half the headstones and Amish cemeteries were headstones of children the genetic problems come down to something called the founder effect because the nearly 150,000 Amish in America can trace their roots back to a few hundred German Swiss settlers who brought the Amish and Mennonite faith to the United States back in the 18th century over generations of intermarriage rare genetic flaws have shown ax flaws which most of us carry within our genetic makeup but which don't show up unless we marry someone else with the same rare genetic markers are you concerned that a lot of these are genetic diseases that they're getting worse or I believe this people talking about that but what to do about it we don't know about that yet what they decided to do was pull the whole community together as they always do in a crisis and in this case they held an auction and raised enough to build a clinic within buggy range right in the heart of their community no more half-day horse-drawn commutes to the hospital and they hired a pediatrician and researcher named dr. Ken mom to start caring for their children good job oh why first saw them I have no idea what do they have but I know why I think for sure they need uh somebody to help them did you know what to expect when you first came out here no I don't think so it's not too good with this clinic I can come over here every day and see dr. Wong if she's not good enough to be to be able to come over here he's come to the house hey Bobby what you doing over there during our visit to Ohio dr. Wong made a house call to check on Bob Miller's children Bobby jr. the sickest of the kids can't tell dr. Wong what's bothering him because he can't even talk and dr. Wong has to treat these challenging cases under the most rudimentary conditions since Amish custom prohibits electricity do you ever get frustrated with the limitations that are placed on you by their culture I don't think so I think this culture has its own heritage in this country we are not come here to change them we're not here to change them I don't see nobody can change it up certain homes like this one have taken small steps toward change some who needed life-saving medical equipment asked for special dispensation from the Amish Bishop to install solar panels just to run the machines and remember those girls with cowan syndrome their mother IVA boiler made a more drastic change she left the church altogether she made that decision eight years ago after her third child in a row showed signs of this crippling disorder submissive Betty Ann yes she's 24 and she functioned that a 9-month level nine irma is 22 and functions as a five-year-old girl and Linda at age 19 can't even sit up let alone talk as soon as I had the third one I knew they kept telling me no she's okay no she wasn't I could hear by her cried she was gonna be like the others their cries different you can tell after you live with it that long you know how did you take care of them you didn't have electricity didn't have a car needed to go to the doctor quite often oh all the time now when she needs to go to the doctor she just pushes a button and wheels the girls into a van she's left buggy rides and the whole Amish lifestyle behind but the price was being shunned forever by the community as well as her ex-husband and her two healthy adult children did you have a hard time with that yes how different is it now raising your daughters much easier much in a year and I think they are the ones that benefit hürmüz now tuned into the 20th century and I was plugged into the 21st using a genealogy website she's figured out she and her ex-husband were distantly related but pretty much everybody who's Amish is related somehow it pretty much looks that way but people didn't know that I didn't is this a very well-kept secret no I don't think that me to really understand that it's a genetic disorder that causes this and that handicap it condition what are the Amish think it is goats a villa God's will it's God's will it's in God's hands you hear that - oh yes oh yes hello dr. Harold Roz who's from an Amish background himself has heard that for more than 40 years since he first discovered the high incidence of genetic problems in the Amish back in the 1960s at the time we did this in the 60s although we used state-of-the-art medical technology and genetics technology at the time we didn't know about the human genome we weren't able to drill down and get to the specific molecular defect so I always felt like we hadn't finished the job that we had started doing he's finishing the job now learning by examining some of the children here in geography Ohio and teaming up with researchers in this London lab to find the actual genes that are causing these Amish disorders what we're really trying to do eventually by pinning down the mutation is to find some kind of treatment if we can find out what went wrong we might be able to correct it they've already identified genes to several rare conditions including this debilitating seizure disorder found in only 12 people worldwide all Amish children there are no cures in sight yet but these doctors are able to offer the next best thing premarital testing to help future parents avoid tragedies like this it's a powerful new tool for the Amish if they choose to use it where do you stand on genetic testing before you get married as far as that we don't believe it number being tested before em do you think that will change it would like to a certain extent but it's I think it's up to God Robert if you were getting married now and you knew that there were genetic diseases out here would you get tested you know that's our voice that was that way we can plus God take care of that animal just there risking the life of their children Joyce Brubaker who comes from the slightly less Orthodox Mennonite faith says at a minimum the Amish and Mennonite should be testing their children as soon as they're born that's what saved her daughter shayla's life after her first child Monty died of an unusual sounding genetic condition called maple syrup urine disease Joyce had shayla tested and she was positive do you ever think about what would have happened if your parents hadn't had you tested uh well I probably would have been a coma or died at that point or had brain swelling which would have took me very dramatic I mean it was just boom boom boom I went the mid with maple syrup urine disease the body turns protein into poison causing brain damage Shayla was immediately put on a strict low protein diet now she's 20 years old and healthy this youngest generation are they're becoming more and more cases of it yes definitely there's the an increase in incidence what are you going to do about that and there's nothing to do about those mutations there is except to try to maybe permit some intermarriage but that it's kind of hard to do hard to do indeed marrying outside the faith could create a healthier gene pool but it would also ultimately destroy the very essence of what it means to be Amish IVA Beiler knows all too well that's probably not going to happen I have a son that married a girl they shared the same great-great-grandfather and when he called me to tell me that he was going to get married I said do you realize that you already stand a big chance to have a handicapped child since yes three seventies and he says yes I know he got married anyway first whether Fred resisted the rules [Applause]

Channel: Ab De la Rosa

Views: 904,891

Rating: 4.5387726 out of 5

Keywords: M4H00468

Id: _eAJDQ_SgDk

Length: 10min 58sec (658 seconds)

Published: Tue Nov 23 2010