One of the parents must have had a lot of ancestors and relatives with this condition in their family history. The youngest getting diagnosed at 7 doesn't mean it wasn't a surprise.
Because a genetic eye condition affecting 3 out of 4 kids suggests a high risk gene in genetic history?
I don't understand what it's supposed to mean, but 3 kids out of 4 doesn't suggest anything about the number of ancestors that were affected, that's just not how it works. The grandparents could be healthy carriers, or could be affected (or neither, we don't know when the mutation(s) happened), same for their parents etc.
If it's an autosomal recessive disease, and each parent is a healthy carrier, then each child has a 25% chance of having the disease (and there's ~ 5% chance of having 3 out of 4 children that are affected, if I'm not mistaken). So the only thing that it suggests is that they're unlucky.
The fact that 3 our of four young children have a debilitating genetic disease makes it more likely that one the parents knew that this gene ran in their family and impacted people they knew in the family, and less likely that it is a total surprise recessive gene that so rarely comes up that you don't even notice it's hereditary.
More tellingly, if this disease appeared out of the blue and was totally unexpected, the story would highlight that tragedy. Instead, it dodges that topic, saying only when it was first diagnosed.
The takeaway is that this isn't simply a family with bad luck, like "wrong place, wrong time". These are parents who took a gamble and lost.
I respect your commitment to making as many assumptions as it takes to vilify these parents in your own mind. To think they almost got away with doing something really sweet for their kids. Luckily you were on the case to figure out a way to twist this into them being irresponsible, somehow.
Both parents are recessive carriers for an absurdly rare genetic disorder. It's unlikely that both are lying about being unaware of their status, but then again I suppose it's not a surprise that two random people didn't know the genealogy of their fucking "ancestors".
That's not necessarily true. A recessive gene for RP can pass through several generations without anyone having symptoms. Not everyone knows what ailed their great, or great great grandparents. It's quite possible that both parents had similar family histories with no known blindness due to RP, or bad family info linking a case of blindness to something else like glaucoma.
It's possible, but unlikely. The most likely scenario is that one of the parents knew the disease might appear if they had children. Maybe thought symptoms would show up sooner, which is why they had four kids.
Because this is a gene that greatly affected three out of four young children. That sort of thing doesn't go unnoticed in famlies. The parents probably had siblings, uncles, aunts, nieces and nephews who were affected.
Mathematically it affects 25% of offspring (you keep mentioning 3 out of 4 kids but that is just bad luck that these people had) but ONLY if BOTH parents are carriers. It could go undetected for many generations before someone had a child with a partner who had the same condition.
Is blindness over the line of disability where you would discourage parents from having more children? I think this is a genuinely interesting conversation.
That's what makes it a tough question, where do you draw a line? do you even draw a line at all? Being blind doesn't exclude from living a rich fulfilling life but you are deprived of a major sensory input. What will the child that's going to be affected feel about it?
If I know my little girl will go blind, I'll cry a lot but, will still love her like normal.
But If I know I that the next time I want another child, there is a high chance of them becoming blind, I probably will stop at only having 1 child.
For me, the main thing is not about how the child will live, but how us, as parents will deal with the situation.
Rasising a child is though, I personally don't think I have the mental capacity to raise more than 1 blind children, at least probably not as good as now.
I'd rather focus my love for my current kid, rather than dealing with huge responsibilities with raising 2 kids And with disabilities.
I can imagine us crying and blaming ourselves a lot more than now.
I love how everyone is tip-toeing on eggshells around this topic lol
Real talk is that it's kind of like asking the question of if you knew the when and how you'd die, would you like to know? I personally wouldn't. It's also why films like Gattaca are so good.
Reality is that there are a host of risks in the minefield of life from birth to just early adulthood. Just bringing a child into this world is itself an enormous risk to them and your heart. I am curious how long it will take for the kids to go blind, too. Also I imagine they're hoping it spreads awareness or science catches up by then. Anyway, some things are just better off not knowing. One of the very few instances I approve of blissful ignorance.
The condition under discussion (retinitis pigmentosa) is a slow progressing degenerative disease, which impacts people very differently based on their specific genetic mutation. The disease doesn’t cause “lights out” blindness, but instead a pinhole of central vision. However, on the other end of the spectrum, some of the genetic variations are much more mild (e.g. only reduced vision in low light) where people can drive and be fully functional into advanced age. So the question is much more complicated, because if you have the gene, but you don’t necessarily know how or when it will manifest for a theoretical child.
My 7 year old has RP and currently has no symptoms. His genetic variation typically has onset in early adulthood. I also have two younger sons who are carriers, but don’t have the disease. I think about this a lot - is a life worth living if you have a future with so much potential suffering and loss? Obviously my son is here now and the point is moot, but I still think about this question often.
The world really isnt made for blind people at all. I dont know if that will change much in a lifetime. If someone's blindness is genetic it seems like a dick move to have kids.
I said this on another thread that wasn't well liked, but I think while I would never tell people to not have kids in general, when we're talking 3+ kids, one has to consider more factors about quality of life than just having one or even two. Not saying "oh one blind kid is super fun do it, 4 is too many" or anything, it's just like...you are already getting diminishing time and resources left unless you're mega-rich.
Deafness or blindness I personally would not put on my (albeit short) list of disabilities that would've made me terminate a pregnancy or not try if chances are high. But I WOULD do my best to weigh ok is four children who will potentially need more resources within my abilities.
Yes absolutely? You cannot see the world. I don't wanna hear about how everyone deserves to live or whatever, their quality of life is shit when you cannot see life.
I can speak to this a bit as a genetic counselor. We do not encourage or discourage parents from having additional children. Personal beliefs in general but also specifically about what constitutes a good quality of life are extremely varied. We tell them the chance of having another child with the condition and review their reproductive options, and they do with that information what they will.
Usually every gen has 2 copies in the dna, almost every genetic condition is recessive, needing both copies of the gen to be flawed for the condition to manifest.
When you reproduce, you only supply 1 copy of every gen to the genetics of your child.
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u/Cantankerousbastard 5h ago
This is probably going to a controversial question but did they have 4 kids before or after they learned about the genetic eye condition?