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Cleft-Craniofacial Community Stories

Holding On– Jasilyn’s Story

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This is me just after I was born.

Hi, my name is Jasilyn (Jazzy) Sitzmann. I was born with a severe bilateral cleft lip and palate.  I am 12 years old and have had 13 surgeries. I am not like most kids though– I LOVE my cleft. When I am told I have to have a surgery, my heart drops. All my doctors are so used to people wanting to change, but to me God made me this way. So to have someone tell me I need a surgery to fix something on me, it  is heartbreaking.

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This was a few months before my 8th surgery (age 8).

I have lived in many places because I am military and have had many doctors. This is not always perfect because having so many doctors with different opinions can be hard. It’s hard to understand which one is the best choice. Not that many people know about my cleft because you can’t really see it anymore. When I lived in Hawaii, I went to a school where I was treated horribly. People would tease me and treat me like I was invisible and laugh when I was not looking. I had so many people say so many hurtful things to me. For example, elephant nose, ugly, and the most popular, fat noseThese things never really hurt me– they gave me a reason to share my story.  I remember one night in Hawaii,  I had been bullied really bad one day and I prayed to God to give me at least one friend to play with. We then moved to Florida and the first day of school I was shocked, everyone treated me like a normal kid. It just hit me a while back that He not only gave me one friend but a whole school. This school has given me so many things. I never knew people could treat me so nicely. Having a cleft has not given me any less possibilities. Because of my cleft I cannot grow on my own, so I take a shot every night. It is a small dose, just enough to help me keep on track. If I did not take them I would still be the size of a 2nd grader.

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This is me before my nose surgery (age 4).

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This is me after my nose surgery (age 4).

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This is me seconds before I bust my lip open from hitting it on the table laughing so hard (age 4).

I have many nights where my brain just fills with thought after thought about my surgeries. When some girls worry about the way their hair looks or their clothes are not right, I have to worry about if the next surgery would change the way I look in a way where I can’t see my cleft anymore. I believe that my cleft is part of who I am.

This was just before my 9th surgery (age 10). My doll ChuChu (the one next to me) has been through all 12 of my surgeries.

This was just before my 9th surgery (age 10). My doll ChuChu (the one next to me) has been through all 12 of my surgeries.

Reading is my favorite thing to do. I believe that the reason I like to read these books are because I can escape this world into a world where everything is perfect. My parents tell me all the time that just because I cannot see my cleft does not mean it is not there and I agree, but I love how when people look at me they want to ask questions. It makes me feel like I am unique. I am very lucky to be where I am today– I am able to speak without speech issues, and I am beautiful.

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This is me 11 surgeries later, about to have my 12th surgery (age 12).

 

Because of my cleft I have been able to see a NICU. Ever since I was 3, I have wanted to be a nurse. I have always loved babies and taking care of others and everything dealing with the medical field.  Because of this I feel that being a nurse would be a perfect fit.

My life is very unique. I love my cleft and do not want to change. I would love to see more kids like me, so I could talk about my feelings with people who understand me. People may hear my story but they never will know the real things I go through.

The Cleft Palate Foundation is so amazing and I love all the stories that people send in. I love my cleft and cannot wait for the next person to ask about my cleft so I can share my story.

-Jasilyn

 

(Read what Jasilyn’s parents shared in 2004 when she was only 10 months old.)