Life As an MPS 1 Adult: Should Rare Disease Patients Have Children?

Imagine you wake up one day and have been diagnosed with a crazy rare genetic disease of moderate to severe symptoms, and ultimately will kill you. Treatments make it tolerable, but life will be painful. Would or should you want to still have children?

I grew up never really putting much thought into whether or not I wanted to have kids, it was just something that was not on my radar. I had to get a girl interested in me first! But as I get ever closer to my 30th birthday and confront the desires to leave a legacy behind, I do find myself debating whether I would or even should have kids. After all, it wouldn't be fair if I didn't at least get a chance to ruin the next generation!

Arguments Against Having Children

Physiological: As a man, my insight into the physiological capabilities of women with MPS is well...skewed. But I will do my best. Condensed features are a common element with MPS individuals, this really doesn't pose any sort of problem for a man when it comes to the creation of children, but body size has a big influence on whether or not a woman is able to withstand childbirth. This, in and of itself is no real reason not to have kids, this sort of issue could happen to people without this disease. But if I were a woman, I would consider whether or not it is a good idea to have a child if my body was too small, risking my life and that of the child.

Genetics: This argument comes in two parts; risk and guarantee. Since I know I have the gene causing MPS, then passing it on only increases the population of those with that deadly gene, and the odds jump from 1 in 150,000 births to 1 in 50,000 quite quickly. If I have four kids, who will go on to pass it on to their kids, shouldn't I consider whether it's right to risk ruining one of my grandchildren's life? Let's raise the bar even higher to guarantee. Say I know that my wife has the recessive gene as well, I am guaranteeing that 1 of 4 of my children will have MPS, and suffer as much if not more than I did. In this scenario, I am both guaranteeing a victim and increasing the population risk of further victims. Why would I want to do that to someone, let alone one of my own.

Arguments For Having Children

Utility: This sounds a little "the ends justify the means", but the more people affected by this deadly disease – directly or otherwise – means the more awareness will be given to its research, resulting in subsequent treatments and ultimate cure. A decade ago I could barely find any information about MPS on the Internet, let alone any doctors that knew it even existed. Now, I've been surprised quite a few times when a newly introduced MA had heard about it before. It's just fact, a lot of people need to get emotionally invested to build awareness, and that can't happen with so few people affected by a disease. Now that thousands of children are dying a year because of MPS, new treatments are being researched all the time. Making it quite all right to have children, because a cure may have been found by the time one of my grandchildren or great-grandchildren contract MPS.

Happiness: If having children brings me fulfillment, isn't that the right thing to do? My offspring could very well be the key that unlocks the cure of MPS, who am I to deprive the world of that? This debilitating disease has given me quite a unique perspective, allowing me to be a comforter for all sorts of people of every walk of life. If I had not been born, what would my parents or those around me not gained merely just by observing my experience? We live in a world where more and more people are being born with something deadly, not having children is only going to prevent me from experiencing fatherhood, learning humility, and all around just deprive me of further joy.


As of right now, I have not made a decision either way, because I'm not sure if I'm ready to even have kids yet. But when the time comes I know my first point of action would be to test whether or not my wife has the gene. If it turns out that she does not have it, I would be more inclined to go for it because of how far we've come with research and treatment. But if it were to happen that she did have it, it would take a lot of persuasion for me to even desire to try at that point.

I'm sure I missed a few perspectives, so what do you think? If you had a deadly rare disease, what would you do?

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