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This is my son. He's a little over 2 years old. He's like any other kid. But what most people don't know is that he has an extremely rare syndrome (genetic recessive disorder) which one day will require a form of treatment that is very expensive in order to be able to live a somewhat normal life. Or a life at all, because in many cases it can become life threatening if untreated. How expensive? Over $800k to be exact. And no insurance will pay for it. He might require it when he's 4, 6, 8 or 10. Nobody knows. But most likely in around 2 to 8 years from now. And he might need other treatments that we don't know about yet.
For those of you who want to have kids, there's genetic disorders testing available if you and your partner want to have a baby. In our case, both parents had to be carriers of the disorder in order for the kids to have a 25% chance of being affected. We never did any testing because we didn't know or expect it. My older son (9), isn't affected, though he is automatically a carrier and needs to make sure his future wife doesn't have the same disorder if they want to have kids.
But guess what? I am happy I had my younger son. Because he brings so much joy into our lives on a daily basis. And I am going to do everything to make sure he gets the treatment to have a good life.
No, I am not asking for donations. But many people know me as a workaholic who works 18-20 hours per day, 7 days a week and they wonder why. Yes, I have been a workaholic all my life, but this is my main reason now and why I can't stop or even slow down.
This post got way too long. Just felt like sharing something tonight that I rarely talk about. Thanks for reading if you made it until here. ❤️
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