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  • Jack H

"We are mad because we can't stop our dear body from flopping."




No one likes it when their body doesn't do what they want to do. No one likes it when they're walking and their knee gives out or the ankle rolls. And for Calder, it's much worse. He constantly holds his breath which leads to his body flopping all over. He doesn't want to flop but his body tells his brain he has to. It's a scary sight. And it's even scarier for Calder. Imagine if your body would just stop breathing for a couple of seconds. You don't know why it does this or even how to stop it. You can try and you can limit it, but it doesn't go away. You don't know where or when it will hit, so Calder has what looks like seizures when he's home, at the park, on a walk, or at the dinner table. It makes Calder feel helpless and like his body is his enemy.

We keep looking for solutions to help Calder. Calder has been tested for lots of different illnesses POTS, epilepsy, genetic disorders, etc. He's been admitted to the hospital for observation by leading neurologists. He's been evaluated by a lot of different experts. One neurologist dismissed Calder's symptoms and said he was choosing to hold his breath because he enjoyed the feeling. My mom fired him. We've traveled to different clinics and even different countries to find answers. But no one has been able to help. It leaves me watching out for my baby brother, worried that he'll have what looks like a seizure when he's playing on the monkey bars or crossing the street. Will I be there to catch him? Is there something I can do to help him? Can I help my parents research doctors?


I have a lot of questions. But the scariest answer I can think of is: maybe there is no answer.

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