OTHERS

Maddie's Big Dream

Rare Disease & Syndrome

Maddie Hoffman

A Little About Me and My Dream!

Hello to everyone! My name is Madison Emily Hoffman, but most of my friends call me Maddie. I am 9 years old and have a severe skin disorder called Ichthyosis. It's hard to say, much harder to understand and explain to my friends. To some of them (probably most of them) I am just “different”….not like them. I have always been able to be friendly and have a good time with almost everyone, but sometimes, my feelings get hurt, and I am sad, because they don’t understand.

Ichthyosis has about 30 different types and mine is one of the most severe. Just my luck right? Not only do I look different with very thick, scaly skin that can have an odor no matter how clean I am, it can be very itchy and painful, too. I can’t wear tight shoes or tight clothing. I have to be very careful because I easily get skin infections. Guess what? I spend at least two hours a day in the bathtub! Some really nice nurses have come to my school from Cook Children’s Hospital. They have told every class about my condition, and sometimes that helps, but I think that for the most part, the kids just feel sorry for me. Sometimes, I am made fun of and bullied about my skin, because it does look bad some days. I try to be brave and finish my day. My Momma tells me everyday, to be brave and study hard. I honestly do try my hardest, but sometimes I am exhausted from being good and doing kind stuff. It’s not just the look of my skin either. It is also that my body hurts. My skin tightens and sometimes I can barely walk. That is when my Momma carries me.

I love being on stage

My favorite thing in the world is being on the stage, either dancing, or singing. Now, I’m even thinking about acting classes. I love to perform for my Momma, my grandparents, and my brothers. I also LOVE to go to Casa and watch the show for children. One day, I am going to be on a stage, somewhere. I am most happy when I am all dressed up for a dance recital, and know all of my family will be there. It makes me feel like I am normal, you know, like the other kids. Pretty costumes and make-up make me “look” like everyone else….It’s all good to me.

I love my brothers

I love my brothers, and they love me. I don’t live with them since my parent’s divorce, but to me they are my heroes. I love to be a part of their lives whenever that is possible. They laugh at me, but I know they really just think I’m funny…”Thank you, thank you very much,” I say. We use facetime a lot when I am not with them so I can have them close to me. I really miss my brothers and my dad when I am not at home with them.

And, then there is Kinlee

Then there is my baby sister, Kinlee. She is a lot of fun, and most of the time we get along, but there are times when she well, just drives me crazy…..not really, but she always has to have things her way and she always wants what I have, no matter what it is !!!! You get the point…but, we are after all sisters, and I love her with all my heart.

God Bless My Momma

I could write a book about my Momma, but sometime just short and sweet is best. She is my champion, my support group, my Queen, my favorite fan, and she keeps me and my body in the best condition possible. She works really hard to make everything work for all three of us, but she manages to keep close to God, and that helps her the most.

Ewwww…Doctor Visits

You may or may not understand, but I HATE to go to the doctor. I don’t care what kind they are, because I know they are gonna want to ask questions that are hard to answer, and make me feel even more different than I already feel.

Maddie’s Big Dream

My big dream and my fondest wish is to be on The Ellen Show. When I’m there, I want to make everyone aware of this disease and how research and funding for trial programs is so very important. Research has come a long way in making things better for all of us with Ichthyosis, but more and more needs to be accomplished if we are ever going to find a cure. One Day…MY BIG DREAM WILL COME TRUE.

I love to watch the Olympics and mostly the gymnastics because their stories make me want to be better than I am. I really try harder every day. Can you help me get the word out about my disease? And, help other kids like me who suffer from rare disease. ICHTHYOSIS IS AWFUL, AND IT IS PAINFUL. It is very difficult to live with. Please take some time and share my story and together we can find a cure for this stuff.

EMPOWER OTHERS!

Share this story to help change someone's life

WELCOME TO YOOCAN

THE GLOBAL COLLABORATIVE COMMUNITY FOR SHARING EXPERIENCES AND KNOWLEDGE BY AND FOR PEOPLE WITH DISABILITIES, SO NO ONE FEELS ALONE.

BY CREATING AN ACCOUNT YOU AGREE TO THE TERMS OF SERVICE AND PRIVACY POLICY.

Please provide your name to be displayed in the chat room.