Meet another Shawnee. She’s 14 years old and has articulated her experience of living with Ichthyosis so well. I really like how she and her parents have made a game of counting the amount of people who ask about her skin. Though really, a child should be subjected to these unrelenting intrusive questions from strangers. She’s got incredible support from her family.

She has Lamellar Ichthyosis and lives in America.

“My name is Shawnee and this is my story about living with Icthyosis.

In October 1999, I was born in Joplin, Mo. When I was born the doctors did not know what was wrong with me. They had to get medical books out to look and see what I had. They flew me to St. Louis Children’s Hospital. There it was decided that I had Ichthyosis.

The doctors told my parents that I might not live past 48 hours, and if I did I might not walk, talk, grow hair or grow very big and might have to be fed through a tube in my stomach and be in physio therapy the rest of my life, but as you can see I have made it fourteen years and it seems to get better everyday!

I have had good and bad times. I have spent a lot of my life in the hospital, but everyday is a new challenge.

My worst thing I had to overcome was people starring at me and asking me if I had been burned. One way my parents helped me deal with this is we made a game to see how many people would ask questions about my skin.

My greatest triumphs were being able to do all the things the doctors I wouldn’t be able to do. I have a sister and two brothers who always challenge me and tell me I can and won’t give up on me till I do what I thought I could do, like riding a bike without training wheels.

My whole family always tells me I can do anything I set my mind to, and you know what? – they are right! Keeping this in mind, my goals and dreams are many. So I haven’t decided yet what I want to be when I grow up.

I like and enjoy so many different things. I like to sing and help with my brothers band. I take karate lessons. I like swimming, science, magic tricks and just being me.I also like helping people. My heart goes out to the homeless.

My favorite food is frito pie. My favorite T.V. show is Duck Dynasty. I love family night. Especially when we play video game and watch scary movies.

I have always wondered why I was born with Icthyosis? I have prayed and ask Jesus to heal me and wondered why He hasn’t, but then one day I heard John 9:3 which talks about the works of God through a person with a disability and at that point I realized why I was born and survived and that God was doing a work through me.

Well I guess as I end this story for now, what I would want people to know is that everyone was born with a purpose in life and NEVER GIVE UP!!”

 

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.