MELISSA: David has a nickname at school. They call him the mayor.
His nurse tells me they're late to every class because everyone in the hallway is like David, David, give me a hug, David. He flourishes when he is around people.
DAVID: Hi, my name is David. So, I think I was born with Alexander disease [but] we did not know. So like, it gives you a hard time to breathe and talk.
MELISSA: David was born healthy. He was happy. He was a great baby. He was late to hit a few milestones as he started to get a little older. At 18 months old, he still wasn't walking, so the doctors were like, “oh well, he'll catch up.” You know, “he'll just figure it out.”
We got to second grade. Teachers started noticing he was getting a little bit behind. Third grade is when things really started to change for him. The school nurse pulled me aside and said, “I think something's going on with David.”
She's like, “I suggest you see a neurologist.” Of course, I didn't want to hear any of those things. Of course you don't want your child to be singled out. I was really scared, um, and didn't understand what was happening. I had no idea about what was to come. And that's what started our long series of testing.
We saw the neurologist, gave a little bit of David's history. She suggested we get an MRI. She's like, let's just get a picture. Let's see if it's something neurological.
So, we get the MRI and it comes back abnormal. That was probably one of the worst moments. I went to the grocery store, and I just remember just crying, walking down the aisles, not knowing what I'm doing, and the tears are just coming down my face because I was like, there's something wrong with my son. There’s something wrong.
The MRI was inconclusive as far as what was happening. During that time period was the absolute worst. Putting David through every possible test, you can think of. Everything that he himself had to go through, I think probably hurt my heart more than anything else, that he had to be strong enough to deal with that at nine years old.
Finally, insurance approves the genetic test. And so that's how we got the definitive results that it was Alexander disease. There's no amount of preparation I could have done for that moment when the doctor walked in holding that folder with the results.
How do you process that your child has been given a terminal diagnosis? Learning the diagnosis, learning that it was terminal. I tried very hard to stay neutral. I tried very hard to be positive about it, as I didn't want it to affect him in any way. Like this, you know, I'll hold all this worry. I will carry this. You are fine, I got you.
It's devastating. It is heartbreaking. It is overwhelming all the time. But you also…diagnosis, you get the diagnosis and I also felt like, okay, now it's almost like go-time into this trajectory. Not necessarily that there was a path, but there was a focus.
Dave is now 18, so we've been living with diagnosed Alexander disease for nine years now, and David has progressed. He has lost a lot of mobility. He can no longer walk independently. He uses a wheelchair for the majority of his mobility needs. He needs help showering. He needs help getting dressed using the bathroom.
He has a G-Tube for food, so I take care of all of his feedings for him. It's a mental load above and beyond a typical mental load. What gets me through the day is David. Our approach to life is we want to laugh every day. We have a ton of inside jokes. We just laugh at almost everything, anything, and we'll look at each other and be like, why are we laughing at this? And we're like, because. Because we like to laugh. You know…that that is...That right there.
DAVID: How does a sheep celebrate the 4th of July? With a baaar-be-cue!
MELISSA: I am so proud of who he has become. I'm so proud of him and how hard he works every day. How amenable he is, how friendly and open and loving that he is. We have such a limited time, and we don't know what that timeline looks like, so I don't want to waste any of the time. I want to do all the things that we can.
It is awful and horrible, but it's also beautiful and amazing that I get this child, this person. He has taught me more about my life than I…There's no other way I would have learned. And that to me is amazing. Devastatingly amazing.
