Reader's View: Spread the word about rare, devastating childhood disease


October 26, 2013 

My mommy is writing this letter for me because I am blind from Batten disease. I wasn't always this way. I was seemingly healthy for the first several years of my life.

Then the seizures started; they changed me.

I used to be carefree, giggly, charismatic and kind, but since the seizures started, I have become sad, angry and I yell a lot, not because I want to, but because Batten disease makes me. And if that wasn't bad enough, Batten disease has taken away my sight, all in the span of about a year and a half. Can you imagine?

My Mommy and Daddy cried a lot for me when they first found out what I had and I cried with them, not because I knew what Batten disease was, but because it made everyone cry when I was around them.

I am now 8 and have lost my ability to learn anything new and I feel more like a 4-year-old in most ways. I feel stupid, left out, different than normal kids. Why can't I do what all the other kids my age are doing? It frustrates me. The people in my head tell me mean things. They scare me. I can't sleep without medicine to help and the medicine I take to keep the seizures away is always being increased as the damage to my brain increases.

I have no idea what tomorrow or next week is. This is very difficult for people around me because if I hear something we are going to do I think that it is happening right now, not later or next week.

I am so forgetful and have lost the ability to say a lot of words and what they mean. Sooner, rather than later, I will lose the ability to talk and will be in a wheelchair because I won't be able to walk anymore. At some point, I will lose the ability to eat on my own.

I am fighting Batten disease with all I've got, but it is winning. I want you to know that I deserve better; I deserve to live; I want to grow up; I want to be a wife, a mommy. I won't get that chance. Batten disease has taken that from me. Ultimately, I am dying, and will not likely live past my teenage years. I will not have a boyfriend, I won't learn to drive, graduate high school, go to college, or get married. No motherhood for me.

Kids like me are rare, and not only because we have Batten disease, but because currently there is nothing the doctors can do to prevent, treat or cure this vile disease.

I am hoping by reaching out to you - yes, you - that even if it isn't for me, future generations of kids won't have to suffer through this disease without treatment or a cure. We deserve a chance for everyone to know about Batten disease so that someday it won't exist; no parents will have to suffer the loss of a child; sisters and brothers won't have to watch their sibling suffer and die before their time.

My mommy told me once a long time ago that you never know what seemingly small thing you do can change someone for the rest of their life. I want to do that seemingly small thing that changes the world.

I want everyone in America to know what Batten disease is and I am starting with you. Tell your spouse, sister, brother, a co-worker. It all starts somewhere, and that somewhere is here, now, today. Ready. Set. Go!

Trina Rodgers, of Boise, wrote this from her daughter Hannah's perspective. Hannah may be the only known child in Idaho with this rare disease.

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