Yoel Simcha enjoys playing hockey, board games, making up jokes, and spending time with friends

Meet the Hero!

Yoel Simcha is nine years old. Some people call him Yoyo, because when he was a baby, his nurses in the hospital in Toronto had a hard time pronouncing his name, so they nicknamed him Yoyo, and the name stuck! When Yoel Simcha was younger, his family moved from Canada to Beitar Illit in Eretz Yisrael. Yoel Simcha likes the color dark blue, and he likes eating cake and hot peppers (and even beat his Tatty in a hot-pepper-eating contest!). Yoel Simcha enjoys playing hockey, board games, making up jokes, and spending time with friends.

Hi, Yoel Simcha! Can you tell us about your condition?

I actually have a few different conditions, which all affect me in different ways. My conditions are called:

1. PCSK1
2. PFAPA (periodic fever syndrome)
3. Severe allergies to many foods

I was born with PCSK1. This condition means that my body does not make some important hormones at all. Hormones are special chemicals in your body that make all sorts of processes happen easily and safely, like growing, and having the right amount of sugar in your blood all the time. My body doesn’t make these hormones properly and that affects lots of things in my body. One of them is my blood sugar dropping too low, which is called hypoglycemia, which makes me feel really yucky. I take lots of medications and get shots every day to help make up for all of my missing hormones.

PCSK1 also causes my stomach to not work so well, so I often have stomach pain. In fact, because my stomach doesn’t work so well, when I was born the doctors thought I would never be able to eat food. I was getting special nutrition through an IV and then I had feeding tubes with special formula for a long time. It’s a real neis that I can actually eat real food now!

Next, PFAPA means that I get high fevers very often. It also causes headaches and leg pain. But I’m not contagious; you can’t catch my fevers from me.

My allergies are another whole story! I am allergic to milk, eggs, soy, sesame, nuts, peanuts, fish, honeydew, cantaloupe, apricots, and pumpkins. I can say that in Hebrew and in English, so that I can tell anyone I need to that I can’t eat those foods. I react to so many things that my doctor jokes that if the wind blew the wrong way, I’d react to that too! I’m lucky that my mommy makes me really yummy food, so I generally don’t feel like I am missing out. Well, besides for pizza. I really want to try that.