There are many reasons why I would like not to have to fight this fight, the main reason being I wish this disease didn't exist and that children everywhere weren't dying of rare orphan diseases like Batten Disease for which a cure is in sight but that don't get the funding or attention they deserve because "it's not enough kids."

There are about 200 children living with neuronal ceroid lipofuscinosis (NCL), or Batten Disease, at any given time. The number is slightly misleading if you use it to gauge the prominence of the faulty genes that cause the various forms of NCL. After all, the lifespan of children with Batten Disease is very short. Even those with the form with the latest onset and slowest progression, JNCL, generally live only into their late teens or early twenties. Children with Taylor's form, INCL, usually don't survive long enough to see the inside of a kindergarten classroom. But Taylor is special, even as Batten kids go.  

200's not the number I'm most interested in, nor does it alone drive me to make a difference day in and day out. The number I'm most interested in is an unknown figure: the number of children who haven't yet been tagged. Because our efforts today will have a positive impact on not just those who have a confirmed diagnosis today, but also those who haven't been diagnosed--or even born. And our efforts--and your support--will most certainly have an impact on people with other diseases. We're not just about curing Batten Disease, though that's why we first got into this game. We're about saving kids' dreams. About giving them the opportunity to be astronauts, or teachers, or fashion designers, or even high school seniors.

Before Taylor was born, she had Batten Disease, but no one knew it. On July 23, 2006, a month before she turned eight and just one day prior to her diagnosis, she had Batten Disease, but we didn't know it. Even in the hours leading up to the mid-morning call from Dr. Wagstaff on the 24th, we believed the enzyme test was a precaution, and nothing more--a test that would never have been ordered had a nine-year-old boy in the area who conveniently saw the same neurologist as Taylor not been diagnosed with JNCL that June.

In early January of this year, I wasn't aware that I carry the gene for Batten Disease--that if my husband carries the same defect, my children could get that same diagnosis one day, and that even if he doesn't, which is the more likely prospect but not a sure thing, they could still pass the gene on to their children. And before Taylor's diagnosis, I hadn't the slightest idea that I should request carrier testing for this disease. I hadn't even heard of it; I didn't know it from Adam.

I saw a billboard a couple of weeks ago that caught my eye: it stated that once every 20 minutes, a child is diagnosed with autism. I saw the same message again in the New York subway this past Saturday. Of course, autism is much more common than Batten Disease and many other so-called orphan diseases. But the mechanism is the same: tomorrow, somewhere, parents will be told that their child has autism--a disorder that unlike Batten Disease is not life-threatening but is very tragic just the same. The two diseases have something else in common: children are diagnosed with autism more frequently today than they were a decade ago, because we have developed a better understanding of it and so know what to look for. I can only imagine what cluttered assortment of misdiagnoses we'd be sorting through right now, nearly two years later, if it hadn't been for the boy who simply went to the same doctor and showed a lot of the same symptoms. Before Batten, we heard "nonverbal learning disability," and "ADHD," and "retinitis pigmentosa." What explanation would they offer us today? And how many children right this second are marked for Batten--whose parents know the other diagnoses don't quite make sense but don't know where else to turn? How many women are pregnant with children who share Taylor's destiny? How many people are there like me, who have walked on this earth for over a quarter of a century without even the remotest idea that we could pass this along to future generations? How many people are like my parents, who walked around with it for about 50 years, had two healthy children and had no reason to worry about the third?

I guess what I'm saying, then, is what number does it have to be--200 or otherwise--to justify dedicating our time, efforts, resources and, most importantly, our passion--into a cause that at its core is about saving children? About saving a single child, or 200, or the thousands upon thousands who haven't yet been conceived, who are on a crash course with a cruel and premature death just because their parents carry this gene and because we look at the numbers and say, "it's just not enough?" How could anyone ever look at Taylor and tell her that her life alone is just not worth it? And how could they ever live with themselves if they did?

What I'm saying, too, is that this became about so much more than Taylor a long time ago. And while I could never put a price tag on Taylor's life or look at her as just a number, and while I would still do it even if her life was the only one at stake, Taylor's Tale has come to represent so much more than her life alone. I want to save every single child--not just those with Batten Disease, but all those whose dreams are threatened by the promise of a life cut short, of a life stolen by an orphan disease for which there is a cure somewhere--just not enough people looking for it.

"For every action, there is an equal and opposite reaction." --Newton's Third Law of Motion

John and I attended the wedding of two friends who are very close to our hearts yesterday afternoon here in Charlotte. Almost nothing on this earth can equal the joining of those who are meant for one another, and we were honored to witness it.

In the midst of my happiness, however, I found myself thinking once again that if history prevails, my younger sister will never live to see her own wedding day. As I sat in the church pew next to my husband, watched the procession and listened to the music--the very same music I chose for our ceremony nearly two years ago--I blinked back tears and then suddenly discovered that I didn't know which of them were for the bride and groom, and which of them were for Taylor. My love for all of them tell me that the answer is some mixture of the two.

Life is cyclical. Juxtaposed against times of joy, such as a birth or a marriage, are times of sadness, often marked by death or illness. On the same note, our moments of joy are made a thousand times sweeter by the tragedies we must also face--or rather the momentary absence of them. My wedding day was the happiest day of my life, but my memory of it is both brightened and blemished by the memory of the day that proceeded it by exactly one month--the day T was diagnosed with Batten Disease. I understand that we must experience loss; I only wish that we had more control over the nature or the depth of that loss. If the euphoria I experienced in the days leading up to and immediately following my wedding day--my sense of being on top of the world, as I said to all of our guests when I toasted my parents--had to be shattered, why must that have happened at the expense of my sister?
 
A little over a week ago, my mom told the story of a conversation she shared with T on a car ride to attend a play about Helen Keller. T informed Mom that she planned to go to the "Tar Heel school," then to vet school at N.C. State and then finally to law school at Northwestern like our good friend, Callie. My mom smiled at a little girl's dreams that would have been farfetched even if she was perfectly healthy. However, when T went on to explain that she would drive herself and her dog, Sunny, to Chicago, it was no longer funny. After all, as Mom mused, these were a little girl's dreams. How can a little girl's dreams be taken any way but seriously? Yes, my sister believes she will grow up and do something special. She even expects, as Mom pointed out, to drive a car. This, coming from a little girl who is totally blind save for perhaps the ability to distinguish between total darkness and bright sunshine.

After Mom told me about her conversation with T, I suddenly remembered why it is so important that we save Taylor, but more than that, I realized more clearly than ever how universal her story is, and how I must do what I can to save all children with rare orphan diseases. You may never have met another child with Batten Disease, and perhaps you have never even met Taylor. And, even if you have, you will never meet another quite like her again. She is what we always believed her to be--special in so many ways--but she is also like any other child, healthy or not, in that she has dreams, and she fully believes that she will someday achieve all of them. She believes that she will someday drive a car; that she will continue her education; that she will meet someone, and they will fall in love, and she will have her day as the beautiful bride I know with all of my heart that she would be. She believes that she will have children, and that she will grow old to watch them accomplish all of their hopes and dreams. Just as she is unique, she is like any other child, or any adult for that matter. And I don't think it is merely childish innocence or naiveté that allows her to believe she will achieve them. I call it courage.