It just sneaks up on you and you feel so helpless. I tell Kyle every day that he is going to beat this disease, he has so much to do here, so he can’t leave any time soon.

Some days, it hits you like a ton of bricks, when you let yourself think about losing your baby. Because no matter what we do, if a treatment or cure isn’t found, our children our going to die. It just seems impossible, when life is so normal, that one day Kyle isn’t going to be here because of something so stupid like this.

We certainly have the option of a bone marrow or cord blood transplant, but all I can think, is that we’ll just end up losing him sooner.

I get so angry sometimes, because it’s just so damn unfair. I mean the other day when we took our kids to the park, a grandfather lifted up the swing thingy so I could put Kyle in, and when he asked how old he is, I didn’t answer. Instead, I just thanked him for help. Otherwise, telling him that Kyle is a year old, just raises eyebrows and questions that I don’t want to answer.

The other day when I was speaking to one of the ladies involved in Kyle’s care, and I was asking how the hell this got to his brain in the first place, and why it doesn’t go there with people with Type 1.

Of course, she said they just don’t know. So I said, well can’t they just inject the treatment right into the brain. She said, actually that is something that is being worked on right now. They are testing injecting it into the spinal cord in the hopes that it will get to the brain that way. She said it’s not in human trials yet, but it’s in the works.

But again, nothing seems to be happening fast enough and it sucks
.-= Melissa Ingold´s last blog ..Quick Update: Assessment For OT and PT =-.