Rare genetic disorder

My daughter has a rare genetic disorder called Homocystinuria. There’s three types of homocystinuria and she has the rarest type. Hers is due to severe MTHFR deficiency. There’s only about 50 documented cases in the world. It can cause developmental delays, dislocated lenses, low muscle tone. She started medication at about 3 weeks. She’s been consistently developmentally behind 3-4 weeks. As I read other patient stories, I get worried with how her future will be. I hope she started the medication early enough to have a positive impact. This usually isn’t caught until much later in life so nobody really knows how it will be if caught early. The waiting game is the worst! Will she have delays, behavioral problems, be non verbal? We don’t know. I needed to vent on here because I’ve been so worried about her future lately, but I know I need to take it one day at a time. 😩😔