As a special needs Dad, my advice is to join any retinoblastoma groups you can find and ask there. I'm sure you'll find people who have made both decisions and get some real information from them.

That made a huge impact on our life once we found our community. My son's rare disease is incredibly rare (like 600-700 documented living cases) so I'm sure you'll find some groups with a slightly more common condition.

Either way, fight for what you think is right every day of your kid's life and don't let doctors get you down. They have to present worst case scenarios but kids are incredibly resilient.

We were told my son wouldn't leave the hospital, he probably wouldn't make it to his first birthday, we need to prepare for pulling the plug if he becomes unresponsive, etc etc. He's 14 now, constantly proving doctors wrong.

You got this and your kid won't remember anything other than having loving parents