life expectancy for leukodystrophy

I can help you because I have Genetic Leukodystrophy which means if I have kids its possible they could have it. It affects your nervous system and later your legs get weaker you'll have trouble walking and the heat when summer comes will bother your legs and give you a hard time. You might not be able to wear pants bcause me and my brother are always wearing shorts because pants etc. will bug your legs. It affects your eyes,,it makes it causes blindness but not right away. There are 34 different Leukodystrophy. Your doctor would have to do test to see which one you have. All you do is get on your computer go to search and type in that word and it will tell you all the different kinds etc. One thing don't give up, you want to keep walking as much as you can, I know someone who gave everything up as soon as he got a skooter chair and now he can't do anything. I wish you all the luck. Tak Care!

My daughter had Leukodystropy. She passed away 12 years ago. You are more than welcome to contact me if you have any questions that I can help you with. 

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My daughter is 9 and has been diagnosed just this year with leukodystropy disorder. She has the x-gene. We are waiting to go to Baylor for genetic testing. She has help at school, and we have her active as much as possible. They put her on add meds too. We have been going through a lot this year. I feel our journey has just begun. No one can give us a timeline though. What happened with your daughter if you don't mind sharing?

Hello Felicia. I am profoundly sorry to hear that ur daughter passed away from this terrible disease. I'm writing because I met a gentleman last summer when my family car hit a deer, and he stopped to help us. We met his daughter who has this awful disease. She's 5 n beautiful. She was walking when I last saw her and he messaged me and said shes no longer walking. His name Horacio John Valverde and he would welcome any help with information you might have from you. THANK YOU SWEET ANGEL , S.Ball