June Featured Alexander Disease Warrior
shared by Chayse’s mom, Kristal Andrews
Chayse is the youngest of three boys and ironically the largest at birth however, it wasn’t long till he showed signs of being a pickier eater than his other two brothers had been. He would never really eat normal baby food and took his bottle for longer than I had ever let the other two. We didn’t think too much of it and chalked it up to just pickiness. Around 2 ½ years old he started to vomit almost every time he would drink a bottle or eat what little food he did eat. Doctors diagnosed this as acid reflux and treated that for a couple of years. From ages 4 to about 8 we noticed that Chayse’s pickiness got worse, he started having serious bathroom issues, his speech began to change, and he seemed to stop growing. We took him to multiple physicians and specialists all over Tennessee trying to figure out what could be going on with him but no matter the test no one seemed to be able to figure it out. At age 11 Chayse had pretty much stopped eating and started having severe anxiety that would lead him to pass out looking very similar to seizures. Weighing only 42 pounds at 11 years old, we finally decided we had to convince a Dr. to do something. We opted for a feeding tube to literally keep him alive.
All the while, he was still suffering with this crippling anxiety. One night he had a panic attack, passed out and hit his head on the pavement. We rushed him to the Emergency room where they did a CT scan. When the Dr. asked us to come to another room with her, we knew that something bad was wrong. She informed us that while she wasn’t sure, his scan looked like Alexander Disease. She recommended we get him to Vanderbilt as soon as possible for genetic testing. The day the test results confirmed the diagnosis was one of the scariest days of our lives! Even worse was hearing the Dr. say that they had never really dealt with this disease before. We were stunned and terrified on the 5-hour drive home thinking about what we had just learned. I did a random Facebook search for Alexander Disease which gave us a glimmer of hope when we found all the other parents. Jenny Bonsky called me before we even got back home that night. She told us how to get in contact with CHOP and Dr. Waldman so that is just what we did. We started being part of the research program less than 2 months after he was diagnosed.
Chayse is outgoing, funny, and one of the bravest kids I have ever met He does not let anything at all keep him down. He loves to sing; in fact, he is a local karaoke celebrity in our small town where almost everyone knows him and loves him like he is their own family member. While he does have some limitations, we are so very blessed and thankful that he is still able to do most things he wants, and he doesn’t seem to care about the things he can’t do. He makes the most out of every day even if we are just sitting around the house doing nothing. Chayse is definitely our hero and inspires us every day to live our best lives.
We are so hopeful in this treatment and in Dr. Waldman. When we first learned of this disease, we were sure we wouldn’t get to watch Chayse become a teenager and now he is almost 18 years old. That is a miracle! We are so excited in everything that has been done for treatment and research of this disease and feel in our hearts that we will see the day that Chayse gets a treatment and all these 9-hour trips to Philadelphia and hundreds of medical trips will be completely worth it!