by Ditri Filis
about the author:
Ditri Filis is 11 years old with Duchenne Muscular Dystrophy. He loves animals and video games. He wants to work at the zoo one day, helping out with the big cats.
11 Years Old with Duchenne
I’m Ditri Filis. I’m 11 years old and I live in Texas. This is my story about how much Duchenne muscular dystrophy has affected my life.
This story starts when I was born on March 8th 2011. When I was born, I had a lot of hair as a baby!
When I was one year old, we knew I had some type of muscular dystrophy. At first, we thought it was Becker’s Muscular Dystrophy. The doctors did lots of labs and I wasn’t happy.
Then finally we found out it was Duchenne muscular dystrophy. We try to go to see a doctor very often to help with my muscular dystrophy.
It isn’t as bad as you might think it is. I still like doing things like playing video games and running around. But since the coronavirus we’ve been in our house for the last two years!!!
Recently we’ve been getting out more. I went on a trip with my dad for my annual clinic in Worcester, Massachusetts.
It’s also really hard for me that I am lactose and dairy intolerant. Basically, what that means is my body cannot digest dairy and wheat, but I still do fine. We look for gluten-free recipes.
When I was three years old, I went to a Montessori school.
It was really hard for me being away from my mom. I went there until I was 7 and after that we started homeschooling because the school didn’t really work out that well. It wasn’t that stressful. It didn’t have homework and didn’t have strict stuff.
One of the times I remember is there was this lady and when you go outside, you’d have to do certain things that you would choose to do. The lady wanted me to do the seesaw, but I couldn’t really do a seesaw because of Duchenne. Another time I accidentally told the other kids that I had mulch cupcakes they could eat. The lady wasn’t very happy.
But I did have a really nice teacher.
Another thing was my dad had appendicitis when I was at school and after school my friend’s mom would pick me up. I visited the hospital but I didn’t really know what was wrong. But don’t worry because my dad is fine.
Something else I like to do is – I like to perform plays. A couple of years ago I was in a homeschool play thing produced by SPARK! I performed the Wizard of Oz with other homeschool kids. I was also in a production of Annie on Zoom when the coronavirus started.
In 2018 my sister was born! She is 4 years old. I like having a sister!! I didn’t really go through the I’m really jealous of my sister phase.
My mom is founder of Family, Friends and Duchenne and I have one dog and one cat.
Thanks for reading my article!!