My son is my world, my reason for living.  If it were not for him, I don't know what I would have done, especially after Jack left me because our son was diagnosed with a serious life-altering problem when he was seven months old.

Now Gray and I are on our own, but that's okay.  We are making it by the grace of God, and every day, every year that he survives is indeed a gift.  Gray Malcolm is now three years old and he continues to delight everyone who comes into contact with him.  He is such a happy child; I can't imagine my world without him.

Unfortunately, Gray's health is getting worse.  He has lost the ability to walk, and he is losing his sight.  He is also losing his hearing and who knows what is next?  His intellect, his ability to eat ... it's scary to think that Jack and I were the carriers of a nasty defective gene that was passed onto Gray, and as a result, he is now marked for however long he lives.  He will never get any better.  He will in time get worse until he reaches the point to where he will be totally helpless.

The thought of our beautiful raven-haired man with the sparkling brown eyes and the dimpled smile becoming a shell of his former self is indeed heartbreaking.  I don't know what I did to deserve this except that I feel responsible for his condition.  I sometimes feel that if I didn't get pregnant by Jack, none of this would have ever happened to my child; he'd be a typical little preschooler:  laughing, running around, riding his tricycle, learning his letters, numbers, and name ...

Now none of that will ever happen.  He will instead lose his senses, one by one, and he will eventually lose his life.  I have seen kids with diseases similar to what Gray has, and it is one of the worst things that a parent can ever go through, knowing that their child's life will be cut short.  I do get angry, but I am learning to deal with my grief; it's something I have been working on for the past three and a half years, ever since Gray was first diagnosed with Leigh's.

I see what other kids with Leigh's (or any similar conditions, like muco poly sacchiadosis, Canavan's, or Tay-Sach's) have become, and it is not pretty.  These kids are totally without sight, hearing, speech, cognitive skills, unable to walk, feed themselves (many are tube-fed or are fed by their family members if they are still able to eat), and are often incontenent, unable to go to the restroom on their own.  It's like they've reverted back to the infant stage of their lives.

I see these kids, and I see Gray, and knowing what he faces.  This is when I hate his illness, and all of its nastiness.  If I could take away his pain/suffering, I would in a New York nanosecond! 

Well, it's time to medicate Gray, so I will run along for now.  Just be praying for strength (on my behalf) and healing (on Gray's behalf); we could both use a huge miracle!  Thanks in advance!

~Love, your new frind in Sisters, Oregon, Judith Rosenblum.  :(

*to be continued.*