Hi. My name is Jonah Arlein. I love sports, playing video games and being with my friends. You might think I am a normal kid, but I am not. When I was a baby my parents found out I had something called Beckwith Wiedemann Syndrome. One day, my mom was playing with my legs and she noticed that one side of my body was bigger than the other. She then took me to the doctor, who thought I had something called hemihypertrophy (it means that one side of my body grows faster than the other). After that, I went to another doctor, called a geneticist, who did lots of tests and asked my parents lots of questions because sometimes hemihypertrophy is a sign of Beckwith Wiedemann Syndrome.
Kids with Beckwith Wiedemann Syndrome have a ten percent chance of getting certain cancers. You might think that is a small number, but it is way more than a normal kid. To make sure I was cancer free, I had to get bloodwork done every six weeks until I was four. I remember going to the hospital and getting poked with a needle through my skin which hurt a lot. My mom said when we would drive there I would scream because I knew where we were going. But, after we were done I got a lot of treats because my parents knew going there felt like a torture chamber for me.
I also had to get ultrasounds every three months until I was eight years old. They were fun for me when I got older because I missed school and also got to have tasty food afterwards. Even though they were fun for me, they were not for my mom. My mom was scared and nervous that I might have something growing in my stomach. Luckily, there was never something in my stomach so I was happy.
Then, in the second grade everything changed. I had my last ultrasound and the hospital threw me a party and gave me presents. They even made a video about me! I never had talked about all of it before and my parents had never told me that the doctors were making sure I didn’t have cancer.
Every year now I go to the orthopedist and get examined and have X-rays. At some point I will have to have surgery to make my legs more even so I don’t get back problems when I am older. Right now, I wear a lift in one of my shoes that no one can see to help make my legs more even. At first I was embarrassed at shoe stores because everyone could see the salesperson taking out my lift, and the shoe is always too big for my smaller foot. However, after awhile I got used to seeing my lift and would even feel kind of special.
I now realize it is okay to be different even if it is only on 2 sides, and I am happy to talk about it and answer any questions.