If It’s Meant To Be

There’s a debate I see in different places on the internet, about whether a person with a genetic disorder should – or even has the right to – have a child when there’s a chance that they too will suffer from the same disorder. In this case I’m speaking of Marfan Syndrome and similar disorders. Is it okay for someone with this disorder to risk passing it on to a child? And, as with any issue, there are a lot of very opinionated people, people who strongly and loudly object, saying that it’s selfish and wrong. And just to clarify, this is my opinion on this matter only in relation to Marfan Syndrome and similar disorders, not the many other genetic disorders in which I’m unqualified to have an educated opinion.

Now, my mom didn’t have the disorder, neither of my parents did. I received the defected gene that causes a tissue disorder via what’s known as “spontaneous mutation”. Meaning, the gene wasn’t inherited, it just mutated on it’s own. This is the case in approximately 1 out of 4 instances of MFS. But, had one of my parents had the disorder already and still chosen to risk it by having biological children here is what my stance is on the issue:

I suffer because of this disorder, I do. I’m always in pain, I’ve had 7 surgeries, I take many medications with many side effects. I worry, about my future, about my heart, about in what way this disorder is going to affect my body next. So yes, clearly, I struggle because of this disorder.

But the thing is, I am who I am because of this disorder and the things that suffering has taught me. I feel like this life has opened my eyes to things that I wouldn’t miss for the world. Things like compassion and understanding and passion. You need to be passionate about the things that you do have in your life, or the struggle wouldn’t be worth the reward those things give you. I’ve been given the ability and the need to fight in order to live and in the end living becomes something that holds so much more meaning because of it. And maybe I live a life that hands me days where all I’ve accomplished is not giving up, but I also live a life that’s been blessed with only the most amazing people to help me through it. I am happy to be here, no matter how much it hurts, no matter how often I question whether or not I can handle it anymore. So, if you asked me; had I seen this life – the good, the bad, the people, the tears, the love, the pain – and been given the choice, would I have chosen to be born to this life, to this disorder? Yes.

Had my mom known there was a chance that I would have this disorder, and decided that it wasn’t worth the risk then none of this would’ve happened. None of the laughter, none of the smiles, the heartbreak, the hugs, the lessons about life that only pain – physical or emotional – can teach you. No “Marfamily” to lean on and learn from, no words of strength from the other side of the world, from strangers in nature but family and dear loved ones in circumstance. And, maybe I’m crazy for it but I would not change those things.

There is suffering everywhere in the world, in numbers incomprehensible, and in ways unimaginable. I have a roof over my head, food in my stomach, a home, a family and yes, I happen to have Marfan Syndrome, I happen to be in pain. But it’s part of life, it’s part of my life. And one day, if my life should allow it, and I need to make a choice: to risk having a child with my disorder, or not, I know my decision. And I know that it’s the right one because no matter what that child may face because of it, they will face it with a love unwavering and unconditional, and a strength unlike any other. If it’s meant to be, it will be.

3 thoughts on “If It’s Meant To Be

  1. Some of your words reflect absolutely what I think. I would have chosen to have been born, too.
    I think it is ok to choose to have chlidren and also ok to choose not to. Because everyones’ Marfan is different and also the suffering is different or feels different.
    I have Marfan, I do not suffer very severely but I lost my father and sister very very early because of MFS and that scares me. I chose to have two children and I won the lottery twice – both girls did not inherite it. With one tear in the eye I chose not to risk any more pregnancies because I feel that my body is not strong enough and I think I have had SO much luck that I can be more than happy. Now i keep on fighting to stay healthy as long as possible to be able to see the girls grow up.


  2. I also support his decision fully. This is definitely open to varying opinion, even on my part. This is my opinion only on the matter of Marfan Syndrome and other similar disorders. But disorders like your daughter’s OI are a different matter and from knowing what I know from talking to you and everything you and your family have gone through, I’d very likely make the same decision as your grandson. The same goes for disorders such as Tay Sachs, or even when two individuals with Marfan Syndrome have children together, the likely hood that child would inherit both defected genes is 25% and would cause the disorder to be severe, in which case I would not risk it.

    You are such a strong family and I have so much respect for all of you. And, if ever you need a shoulder (or the internet equivalent), I’m here.


  3. After Vic was diagnosed with OI, we chose not not have more children. I was very angry when I heard that Vic was pregnant, not once but twice. I am so grateful for her beautiful boys and would not change them for the world. Katie, my heart however bleeds for them when I see them observe and live their Mom’s suffering. Jared, the eldest, definitely has the OI gene and is determined not to pass it on… I support his decision 1000%


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s