So what exactly is MLD?

The MLD Foundation website explains it the easiest, MLD stands for Metachromatic Leukodystrophy, which in human terms means meta-change, chromatic-color, leuko-white matter, dystrophy-degeneration, so in other word degeneration of the white matterof the brain and central nervous system. His body lacks an enzyme called arylsulfatase A so the sulfatides in his body eat the white matter on his brain (Myelin Sheath). He will one day be totally incapable of walking and talking and eating and everyday functions that we are able to do. There is no time frame on when things will happen or which order they will happen in. Everyone with this disease are all different with symptoms and how they react to certain types of meds to help with the symptoms, it is like the snowflakes there is not any two that look alike at all. There are 3 types of MLD infantile, juvenile, and adult. We feel blessed to have the adult version as the disease progresses at a slower rate, also it would be difficult to have a child with this, I know many parents that have children with this and they do an amazing job with their children with MLD and also their children that do not have MLD. I look up to these amazing people that have children with it what a difficult job they have and they do it amazingly well.

Jaren sometimes has really good days on the good days he remembers things that he needs to remember, he also has medocre days where he will remember things and also does things that are questionable I just figure it has been a long day and just move on. Some days are horrible on these days he is terribly ornery because he doesn't remember things and sometimes he starts fights with the kids and sometimes he doesn't even remember who I am, very hard to deal with when he is like that. Somedays I feel like I have a teenager that wants to argue with me for anything and everything which can be very frustrating I try my hardest to keep my patience but sometimes I do have to send him to a time out so that he can take a breather and relax. I used to not be a very patient person but I have learned to try to be as patient as I can some days are easier than others, but I guess that is life!!