Hello here I start I am since the end of February on the group I read the posts with a lot of attention in the hope to learn more and more especially to understand always a little better what is the AMN.
I have been living for eight months now with an extraordinary boy certainly it is AMN so necessarily not ordinary.... But apart from that, it is just as much his intelligence and his vision of life that brings me immensely and makes me understand the true values important to enjoy the best moments of this life!
What brings me today to write is my desire to share my little experience of life with 3 (2 + AMN) with other husband or wife in my case.
It should be known that overall from the outset I knew more or less what I was going to face because my boyfriend was always very clear that it was for the probes to urinate (and leaks sometimes in clothes), sexual problems, his personal medications not very legal but natural and that fits him best, different moods, and this symptoms more complicated for me attention during discussions that is short term So I often end up talking in a vacuum and not being heard....
I read posts here of people afflicted with the disease themselves or parents for their child but rarely concubines like me and yet I think like me we also need to talk and share our experiences.
Nice Day to you!...
(sorry I'm French and translator write for me.... Well I hope you understand!)
drugs for 8 years old boy suffering ALD
I hate to ask but i need to know…how long after the disease sets in do male children have before they lose the battle with this disease?