Zack stops his wheelchair at the edge of the grass. The other kids in his kindergarten class are playing on the swing set during recess in Jackson, Michigan. One year prior Zack was a healthy 4 year-old boy, energetically swinging on the same swings and climbing the jungle gym. Zack wants to play with his friends badly but he has to keep his chair on the concrete. So he watches. Zack’s sidelined for now, but he’ll figure something out. A smile crosses his lips, tomorrow will be different.
The next day Zack starts offering rides on to the other kids on the back of his wheelchair. The kids love it, they love Zack. He’s finally playing just like any other kid at recess. And that’s all he wanted.
When the kids at school ask what’s wrong with him he says, “My muscles are sick.” Just 5 years old now, he accepts the truth of the words with absolute simplicity. His muscles are sick; nothing more, and that’s ok with him.
But Zack’s muscles are very sick. Even worse, nobody knows what is making them sick. After breaking his leg in 2012, Zack’s mother noticed he still walked with a limp long after his cast came off. The orthopedic surgeon took X-rays but they came back negative. The limp persisted, and the search for answers began.
An MRI revealed that his sensory nerves are developing well but his motor nerves are dying. His cerebellum (the part of the brain that controls motor skills) is losing mass. His mother Jessicah explained, “Your cerebellum is supposed to look like a bunch of fat, little thumbs crowded together. His looks like long, skinny fingers spread apart.” There are very few diseases that affect ONLY motor nerves. – All are quite nasty and have been summarily ruled out by some of the best doctors in the country.
To the best of anybody’s knowledge, Zack has a genetic disorder that falls under the neuromuscular classification. His muscles are deteriorating at a shockingly rapid pace. His legs weakened and leg braces were no longer enough to support him. It wasn’t long until he was confined to a wheelchair and the Zinks scrambled to retrofit their old family minivan to accommodate Zack’s new wheelchair. The mysterious disorder quickly spread to his shoulders and neck, then to his eyes, esophagus, and jaw. The act of chewing is exhausting but Zack’s mom insists he take a few bites to “enjoy the small pleasure of food” before feeding exclusively from his G-tube.
Zack’s muscles are failing him a little more everyday. Zack can barely raise his hands above his head anymore. His lungs are not strong enough to cough. Each morning he wakes up to a cough-assisting machine that shoots air directly into his lungs then quickly sucks it out, essentially coughing for him.
On April 4th of this year, on Jessicah’s birthday, the Zink family received devastating news. Their doctor told Jessicah and his stepfather Cliff that Zack was terminal with no treatment plan. The likely scenario will be that Zack will catch a cold or flu, anything that will produce more secretions than usual, then the fluid buildup in his weakened lungs will turn into pneumonia, and he will pass away. Nobody wants to give a timeline but, when compared to similar neuromuscular disorders, December or January seems likely. Zack only knows he’s sick. The family was told to “Expect a harsh winter.”
Jessicah and Cliff were despondent. How had this happened? What should they do? Pull him from school and isolate him? I asked Jessicah what that was like.
“Zack is still in school and he could get sick, but I can’t isolate him from his friends. I want him to experience everything he can, right down to enjoying the taste of his food. He’s still cognitively a normal 5 year-old. And I don’t know about you, John, but I still believe in miracles. What if I pull him out of school and he makes it through this only to be stuck at a kindergarten level cognitively and emotionally? I won’t do it. He may be dying but he deserves to experience social joys.”
And you better believe that Zack is out to experience everything he can…