When did you get Krabbe Disease and is it permanent?

I was born with Krabbe and when I was 18 days old, I began 10 days of intensive chemotherapy. Then when I turned 28 days old, I had a cord blood transplant. I had been in the hospital for 40 days after the chemo because I couldn’t fight any infections until my immune system started to build up. The transplant replaced the enzyme I was missing, but any damage prior to the treatment would stay there. It hurts a little bit when I get scratched because I’m so tight in my hips and it takes me a long time to get dressed because I have to put on my shoes and braces. Others don’t treat me differently because I have Krabbe, they treat me like how other people are. 

Krabbe is a lifelong thing. My walking can improve but I’ll still have Krabbe. Having surgery was good for me because of physical therapy. I can stand without holding on to anything. I always find a way to do what I need to do. 

**story corrected on 1/24/23