Why I Want an IVF Baby to Screen Out the Gene That Made Me Go Blind

Hey everyone, Lucy here. So, this is a big one. A really, really big one. For those of you who don’t know, I’m blind. Born blind, actually. It’s been my whole life, and honestly? I wouldn’t trade it for the world. Sounds weird, right? Blind and wouldn’t trade it? Bear with me.

My blindness is caused by a specific gene. A faulty gene that, well, messed with my optic nerves. It’s a pretty rare one, but it’s mine. And it’s the reason I navigate the world differently. The reason I’ve had to learn incredible skills, the reason I’ve built this whole community of amazing, supportive people. It’s a HUGE part of who I am. It’s shaped my entire life, my perspective, my everything.

But here’s the thing: I want kids. More than anything. And knowing what I know now, knowing the struggles I’ve faced – and the struggles my potential child *could* face – I’ve made a decision that might seem…controversial to some.

I’m choosing IVF. Not just any IVF, but IVF with preimplantation genetic diagnosis (PGD). This means they’ll screen the embryos to make sure they don’t inherit the gene that caused my blindness. And yeah, that’s a massive decision. A life-altering decision.

I know what you’re probably thinking. “But Lucy, you love your life! You’re thriving! Why wouldn’t you want your child to have that same experience?” And you’re right, I *do* love my life. I wouldn’t change a thing about my journey. But that doesn’t mean I want my child to go through the same struggles.

It’s not about rejecting my blindness; it’s about empowering my future child. It’s about giving them the best possible chance at a life *without* the challenges I’ve faced. Think about it – the constant adaptations, the struggles with accessibility, the potential for discrimination… I wouldn’t wish those difficulties on anyone. My hope is that by using PGD, I can give my child a fighting chance to avoid these hurdles.

This isn’t about creating a “perfect” child. It’s about making an informed choice to reduce the risk of a significant genetic condition. It’s about giving my future child the gift of choice, the opportunity to navigate the world on their own terms, free from the specific limitations my blindness has presented. The fact that the condition I have is related to sight is coincidental. I could have applied the same logic to any other significant genetic condition.

I know there are ethical debates surrounding PGD, and I’ve spent a lot of time grappling with them myself. There are so many nuances, so many different viewpoints. But for me, this decision is about love. It’s about wanting the best for my future child. It’s about making a proactive decision to increase the chances of their health and well-being.

This journey won’t be easy. IVF is emotionally and physically taxing. But the thought of giving my child the gift of a healthier start to life—a start that minimizes avoidable challenges—makes it all worth it. I’ll keep you updated on my journey. Thank you for listening, and for understanding.

Love,

Lucy

P.S. Feel free to share your thoughts (respectfully, please!) in the comments below. I’m learning and growing every day, and your perspective is valuable.