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On Sunday March 28th KCsupport gained a new member named DixieGirl, who we now know as Kristy. Kristy is Anna’s mom and this is the story Kristy shared with us about her Anna on March 28th …

This is my story. I joined this group for one very special reason. That reason has beautiful brown hair and brown eyes. She is caring, gifted, witty, and ambitious. She loves Barbie dolls, nail polish and dress-up clothes. She is my daughter, Anna. Anna is 5 years old and also has advanced keratoconus. Not something I thought we’d be dealing with at this point in our lives.

For the first several weeks, I couldn’t say the word “keratoconus” without crying. All I could think about was that my little girl’s vision was going to be impacted. I kept thinking about all the things that she might “not” be able to do because of kc. I felt extremely guilty about all the times that she asked me to stop and take a moment to look at something that we might never have the chance to travel and see again. I just always assumed I’d have a lifetime to show my children all the wonders of the world.

After my own self-induced pity party, I began to realize how silly I was being. Anna has shown me that the beauty of the world can be seen with more than just your eyes. It can also be seen and felt through your heart. And believe me, she has an enormous one! I want share with you the conversation I recently had with Anna that made me realize this.

Anna happened upon a booklet about corneal donation laying on our kitchen table, she asked me to read it to her. Keep in mind, she knows that she sees things funny and that she has seen a lot of doctors recently, but that is about all that she knows right now. She has no idea that a corneal transplant is inevitable for her.

I took a deep breath then asked her if I could simply explain the book instead of reading it. I paused a moment and said a silent prayer. I then explained to her how a person can donate an organ that they have two of such as a kidney. Then I went on to tell her how a person with a sick heart can have another chance at life though the generous gift of others. I told Anna that sometimes people are in accidents and are not able to be saved. When this happens, those same people have the opportunity to become heroes through organ donation.

Our conversation then went like this…

Mom said: It’s the greatest gift you can give anyone.”

Anna said: “Would it also work for eyes? Could a blind person get new eyes and then be able to see again?”

Mom: “It’s possible.”

Anna: “That would be a miracle, mommy! It would be better than any birthday present you could ever get. I think everyone should be a donor. How do you get to be one?” (I explained to her the different ways that a person could make their wishes known.)

Anna: “Mommy, I just want you to know that I want to be an organ donor. Can we e-mail everyone we know and ask them to think about becoming one, too? You just never know when someone you love might need an organ. I would be willing to give anything I have to help someone.”

We then went straight to the computer and began to type. I did the typing, but the words that follow are all Anna’s:

Have you ever wanted to make miracles happen?

Well, maybe one day you can…

Become an organ donor today.

Please don’t wait!

Love,

Anna

Regardless of what stage your kc is at, the world will always look spectacular when you view it with an open heart. Thanks for giving me a place to ramble on.

Kristy

To anyone who has KC, I think you would agree this story is very moving. It is hard to believe that a 5 year-old child would be faced with a disease that we, as adults, have a hard time dealing with. As KC’ers, we know first hand both the frustration and diversity of treatment options. Knowing what treatment to choose for ourselves can be a real challenge- one can only imagine the uncertainty a parent feels when trying to determine what is best for his/her child’s vision and, ultimately, their future.

Anna's physicians agree she will inevitably need transplants. Unless, of course, efforts to develop better alternatives are successful. Anna's physician informed Kristy that the only reason Anna is not a good candidate for a transplant now is her young age. Although very little blood exchange occurs in routine cornea transplants, there remains a chance for rejection, infection and other complications. The chances for such complications, especially rejection, can be higher when the patient is as young as Anna because the immune system is stronger the younger the patient.

Anna's KC also exhibit a rather large amount of thinning and, if she were older, she would be an immediate candidate for transplants. Her physician has told Kristy and Russell, Anna's father, that they will at some point have to decide which risk is greater... the risk of spontaneous rupture, known as corneal hydrops, because the cornea is becoming too thin or the risk of rejection and complications due to her young age.

That only reason Anna's seems to be doing well, her parents have been told, is because she has never seen much differently. Her doctor feels that things aren't as difficult for Anna right now because of age appropriate settings such as large print books and school materials. However, as Anna moves up in school, life for her will get much harder. For example, simple things such as telling time, which she could do fairly well when she started kindergarten, have become frustrating for her now.

This is Anna and this is her story. At KCsupport, her story will not stop here. More needs to be done to bring awareness to KC, especially when a young child is diagnosed. It can be a very trying time on parents. As Anna grows, so will her visual needs and, as a parent, this will prove to be challenging when deciding what to do and where to turn. Obviously, more needs to be done.

We will continue to follow Anna’s story and her progress while at the same time doing all that we can to improve the situation of both adults and children who suffer with KC. Rest assured Kristy and Russell, KCsupport and it’s members understand the uncertainty and frustration you are going through. We will do everything in our power to lobby KC issues and hopefully take away some of the uncertainty that presently surrounds Anna’s future. It is sad to know that the adorable little person pictured above will have to battle this condition. Science needs to be on our side and help give Anna the visual correction she needs without the risks that current treatments possess. Thank you for introducing us to Anna and for sharing her story with us. Here’s to a happy ending for Anna.