Donna Gossett - Summer 2004

My name is Donna Gossett, and I’m from a small town called Cullman, which is in the middle of Alabama. I’ll be 36 in August.

I have Fibrous Dysplasia, a bone disease that affects my left cheekbone, causing a growth on my cheek that looks like a
tumor. I was given this diagnosis when I was nine years old, after a lot of research by a team of doctors. When it came time to operate, I was told that the insurance company would not pay
for the surgery because it would be considered cosmetic.
To this day I’ve never had any operations.

I was told at the time that I was the only one in the state of Alabama with anything like this, so I felt very alone and isolated. In
my senior year of high school I saw the movie, Mask. Then I knew there were other people like me.

I’ve been a fan of Cher for a long time. I watched “The Sonny and Cher Show”; I never missed an episode. Listening to her music helped me out when I was feeling down or made me feel even better when I was having a good day.

Cher is the reason I found CCA. When I got my computer in 2000, I found CCA through her Web site. How wonderful, I felt, that there was such an organization.

I’ve been teased and called names a lot while growing up, and as an adult, I still have to deal with stares and rude remarks. For example, an older lady asked me in  front of my kids, “What is wrong with your face?” I just looked at her and smiled. Then, very matter-of-factly, I went into full detail of my disease. I hope she thinks next time before she asks someone a question like that again. I’ve said many times that I’m having a T-shirt made with “Ask me.” on the front and “I have a disease called Fibrous Dysplasia!” on the back.

I’ve had somewhat of a normal life. I met my wonderful husband who loves me for me; we’ll be celebrating our 20th wedding anniversary next year. We have two kids: Kyle, 10, and Kayla, eight.

I learned how to deal with my situation, but it took a long time. I feel like a butterfly now. I owe CCA a lot of credit for that because I use to hide in my little cocoon until I had a reason to really come out. When the newsletter came out about the “Reconstructive Surgery Act” HR 1499, I knew that I could do something to help.

I don’t want another child to have to go through what I went through, so I went into full action. I called Tim Ayers at CCA. Then I contacted my representative and senators and started talking to them about the bill. Of course, they were unaware.

To get even more attention to the bill, I contacted my local newspaper, and they printed a feature article with a full picture of me. Then I contacted a local news station and had an interview with them. Because of what I did, I got a lot of attention brought to this bill in the state of Alabama.

Then I had some kids writing letters to congressmen on my behalf. I’m a substitute teacher, and of course the kids are curious as to why I look so different. I explain to them that I was born this way and the fact that someone may look different doesn’t make them a bad person. I try to teach them not to treat others differently because of their looks. I explain to them how bad someone could feel and how I have felt when others were mean like that to me.

Through selling raffle tickets I’ve spread the word about CCA in my community. I’ve become friends with the staff of CCA, and they are just the most wonderful people. It’s so great to know that there are such understanding people out there.

When CCA invited me to come to the Cher Family Retreat, I was just so excited to get a chance to finally meet others like me. I’ve met the most beautiful children, parents and adults. I never felt like I was being stared at or being judged for the way I look. Everyone treated me like part of a big family. I had a FABULOUS time. Thanks, everyone!

I would also like to give a big thanks to Karin Perry for giving me a scrapbook page, so I could write to Cher and thank her for all she has done. Maybe one day I’ll be able to meet her. 

We had such a great time at the retreat, and I cried when it was over. I can’t wait until I can see everyone again. I hope to come back next year. 

I plan to continue using my story to help and teach others. In fact, this fall I’ll speak with kids and share photos at a fund-raiser my school is having for CCA. Maybe one day I can make an even bigger difference in this world.

If you would like to share your story with CCA, please send an email to Annie Reeves at areeves@ccakids.com. If your story is chosen, with your permission, we will edit and publish it in the CCA newsletter, on the Web site or use it for public awareness programs. Not all stories will be selected.

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