All About Me & Louie By Esme Edlund (Age 8)

Hi my name is Esme. I have a brother Louie who is seven and a sister Orla who is two. There are a lot of things that make me, me. First I will tell you about me, then about my family.

One day I went on a bike ride with my dad and he was far ahead of me. I tried to keep up with him and then I was closer so I went faster but then everything went black. I woke up in the car and we were going to the hospital. My mom told me I broke my tooth and that she was pretty sure my foot was sprained and my nail got ripped off too. When we got to the hospital I saw the doctor he said I almost got something called a concussion. The next day I went to the dentist. I couldn’t eat whatever I wanted and needed to only eat on the side of my mouth. I am better now and back on my bike.

There is much more that makes me, me I want to share with you. My brother Louie is special to me because he has a rare genetic disease called trichothiodystrophy.  Because of that disease Louie was in the hospital for seven months. In that time he had surgery and got a trach because his lungs don’t work as well as our lungs. He got weak because he was sick and lying in bed. Some days Louie has to get a blood transfusion. Most of them are for the entire day. It makes me sad when he is in the hospital. I really wish he didn’t have to be there. When I am sad, scared and angry I like to share my emotions. I feel this way because I don’t want Louie to be in the hospital. I love when he is at home.

Louie is hard to take care of and we can’t go many places with him. Louie can’t walk and he has a power chair because he can’t walk. I wish people knew that you can’t just see my brother Louie as a special needs person. Louie is on a baseball team in the Miracle League. His jersey color is orange. I wish Louie could walk. I also think he will be good at talking when he is able to.

Louie is just fine now and he is very sweet and caring. Most of all, he is part of my family and I love him with all my heart.

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