<p>I don’t understand the need to keep having kids when they are born with such a horrible disease, which is very painful to the kids</p>
<p>Why after the first 2 who have major deadly health issues, that are hereditary, do you keep going pretty much knowing your kids will be born into a painful difficult life</p>
<p>why get pregnant again and again</p>
<p>call me cold, but I don’t understand this family</p>
<p>I am glad the parents are taking care of the kids, but I would have NEVER gotten pregnant again and again if I knew that most likely my kids would suffer painful lives</p>
<p>most shows, I totally agree with the families picked, and understand the circumstances, and go, YES…</p>
<p>but this week, I don’t know, it just made me mad</p>
<p>and something else, the faimly didn’t seem like other families- it was just off for me tonight, can’t explain it, but just off</p>
<p>Having spent ten or so minutes researching EE on the Web, the criticisms of this family on this thread may be misguided. First, the literature says that the condition may or may not be genetic – it’s unclear. Second, the oldest son developed EE secondary to a rare birth defect where some of his external organs were on the outside of his body. This is not something that runs in families. Third, according to the available lay literature, this syndrome is frequently misdiagnosed, and the diagnosis is usually the result of eliminating other possible diagnosis. Like some other conditions, like ALS, the diagnosis is largely one of of exclusion. Fourth, I just finished watching the show. When the mother was telling the family’s story, it sounded like all four children were diagnosed with EE at the same time, which would be consistent with “why didn’t they stop having children?” I might be mistaken about mom’s story – I wasn’t taking notes.</p>
<p>I don’t see any particular reason to jump to negative conclusions when all the facts are clearly not in evidence. There’s no way you could really understand a family’s story in the context of 42 minutes of television time. Not even my family, actually, and we are pretty boring. (For example, they didn’t mention that the father is suffering from a medical condition that could lead to blindness at an early age. This information is in the link in the OP’s first post.)</p>
<p>I don’t think that because someone does something I don’t understand that they are necessarily stupid.</p>
<p>EDITED: It is, of course, equally likely that they understood the risks and kept having kids for some other personal reason. That strikes me as pretty dumb.</p>
<p>If I had two kids who needed so much medical care, help and there was the possibilty that more kids who have the same painful disease, I would NOT get pregnant. My energies would be for the two wonderufl lives I already had</p>
<p>And even IF my subsequent kids wouldn’t have any health problems, I wouldn’t take away from the ones that obviously had so many things that needed to be dealt with</p>
<p>Even without the diagnosis of EE, it appears as though all of the children had some other kind of chronic illness after birth – yet they seemed to have the children almost back to back. There’s very little age difference between them. How did this woman handle sick children, pregnancy and babies at the same time AND do her community service work??? Maybe she was rewarded for that!</p>
<p>The first child was born with his intestines outside of his body, the second one had pneumonia for 2 years and needs to be fed through a feeding tube as well as the third one. Maybe they didn’t diagnosis the EE until later on, but how did this woman care for all of these sick babies at the same time and continue to have more???</p>
<p>I didn’t see this show as I rarely watch TV. I did read the articles. I find it distasteful to cast aspersions on another family. For one thing, the mother states they did not know their kids had this disease until after they had all four. Yes, their kids may have had other problems and they may not have known they’d become chronic problems. But no matter what the situation, there is way too much judgment here. It is understandable that some would not CHOOSE what this family has chosen. That doesn’t make anyone more “right” than the other. If they are comfortable with their choices and are loving and caring for their family, who is anyone else to judge? It is working for them. They have had to roll with the punches as the chronic situation for all four arose after they had all four. They didn’t know that this would be but are dealing with it.</p>
<p>The parent’s choices all seem fine now that Extreme Makeover has stepped in and provided the family with all of the comforts, but what does it say about their choices if the children had to live in the conditions prior to the makeover? For every additional child they had who was sick, it took something away from the previous sick child – and I’m not talking about the EE. I’m speaking of the illnesses the children had prior to the diagnosis of EE.</p>
<p>and while I was looking at their house, they had a big screen tv, leather furniture yet they had walls covered in mold</p>
<p>priorities. people</p>
<p>“comfortable with their CHOICES”- </p>
<p>again, if I had a child with special needs, who required lots of my time, I would put my energy and resources into the children I had…not keep making more</p>
<p>and IF i had that much to give, I would go outside my home and help kids already here with those health issues, not cross my fingers</p>
<p>as for right, if you have three kids with such major health issues, in a home that appears to be falling apart, why do you CHOOSE to have another child when you can barely take care of the very sick ones you have</p>
<p>and IF the family did not know the severity of the problems their kids that they already had have, then they weren’t doing a very good job taking care of those kids</p>
<p>I don’t watch this show because I want to be entertained by pleasant things. I found myself depressed every time I watched an episode because of the sad circumstances of the lives of the family members chosen. My little nephews thought that their family could be chosen. They happen to come from a very blessed family with a home that is 3 times the size and infinitely more beautiful than my modest home. I joked with my sister in law that to get chosen you need to have at least one family member who has only one leg, one eye, recovering from cancer, etc., and have an outhouse for a toilet (or a variety of similar circumstances).</p>
<p>The piece that wasn’t spelled out last night during the broadcast is that these children are unlikely to reach the age where they will be able to use their full-ride scholarships to College of Idaho. What they have been given is a chance for a much higher quality of life for their children, however long or short that time may be. They could not possibly have anticipated the trajectory of the medical conditions their children were born with. This is a great tragedy, not foreseeable, and deserving of compassion.</p>
<p>I am saddened that some people don’t think that people with poor genetic histories shouldn’t have children. Many people with chronic disabilities and/or terminal illnesses are able to live happy lives despite having a shortened lifespan.</p>
<p>I HATE that show! I HATE Ty Pennington, the designated blonde cryer, the English dude, and everybody else associated with that show. IMO it’s the symbol of corporate greed, exploiting everyone’s emotions for the sake of a gigantic Sears commercial. If it quit getting ratings ABC would leave all the poor people in America hanging at the drop of a hat.</p>
<p>Of course, that’s just my opinion, I could be wrong.</p>
<p>In my work I care for a number of children with EE–most lead relatively normal, healthy lives. Some have food allergies which aggravate their EE and for those with multiple food allergies, a feeding tube may be necessary, but it is certainly not the norm.
Most of my patients are managed with medication and elimination of allergens when we can find an allergy. They require careful follow up with a gastroenterologist and allergist and routine endoscopy to evaluate the extent of eosinophils in the gut and assessment of damange to the lining of the gut</p>
<p>This family’s medical experience with EE is way off the norm in my experience and they should not be judged but should have our empathy. EE does often go many years without a diagnosis</p>
<p>I don’t know enough about the mom and dad to know how they ended up with four sick children, but how overwhelming! At least the kids got some help, and were able to eat real food for the first time in a long time. Seeing the mold problem in the house made me wonder if that might have contributed to their problem. Mold can do nasty things to people. I hope the new mold free house helps the kids become healthier. </p>
<p>We lived in a horrible mildewy apt. when our first two kids were young, I still think it caused some of the problems the boys had with allergies and being sick a lot when they were young. My husband and I both got bronchitis living there, and he still uses an inhaler. I’ve never had bronchitis before or since. I would bleach the cinder block walls regularly, but it wasn’t enough. At the time, I didn’t make the connection between the mold and our health when we were living there, but moving out of that place made a big difference in our health.</p>
<p>I read in the paper recently about a family with four children diagnosed as autistic, and have heard about another family with three (or four?) autistic children locally. Honestly, I don’t know how these families are able to do it.</p>
<p>EE (eosinophilic esophagitis, eosinophilic enteropathy) is was not considered genetic or hereditary, untl only recently when families popped up with multiple sibs with the disease. There was a landmark article only published in Feb 2006–that would be only 18 mos ago- that shed light on the genetic and complicated nature of EE. And from what I understand, there were misdiagnoses in this family and the diagnosis of EE was not made until the last child was born. </p>
<p>By the way, it (unfortunately )happens rather frequently in even the more common hereditary diseases: to be diagnosed later in childhood, or to be misdiagnosed early. This means that there are many families who have 3-4 kids before it is known that there is a genetic illness afoot. Especially when the illness is autosomal recessive, and neither parent has a clue that they are carriers. </p>
<p>As the mom in the show is quoted as saying in a link above “They think we knew our kids were sick and continued to have sick kids,” she said. “That’s not the case. We didn’t find out what happened until after we had them all.” “I try not to focus on that. I try to focus on the positive things.”</p>
<p>I too hate that show. Is anyone old enough to remember Queen for a Day? This show reminds me of that…take the most pathetic family you can find, so the viewers can all feel like they at least have more than THIS family, and give them the best of everything, but usually on the same lot in the crappy neighborhood. I mean I’m all in favor of helping a deserving family; still can’t stomach this show.</p>
<p>How do they pay the increase in taxes? And when their new 72 inch flat screen breaks, how do they pay to get it fixed?</p>
<p>btw can’t imagine having one severely challenged child let alone four. I do hope this makes life easier for them.</p>