Here are some memories gifted to us this year:

• The addition of a Suzuki violin group – especially touching for Taylor’s mom, because Taylor took Suzuki violin lessons the year we learned she has infantile Batten disease
• A 6-year-old boy played a small violin, and he and his younger sister sang the Spiderman song together; Mom and Taylor sing that song every morning when they brush their teeth (they don’t know why – they just do!)
• The students ranged from very accomplished/experienced to brand new – i.e. one girl just two months removed from her first lesson, yet willing to step up and play (and do a fantastic job!) for children with Batten disease
• The little sister of the former student who played sans butterflies – with so much joy, in fact, Mom thought they’d have to close the piano lid at the end of her turn
• The students who remembered meeting Taylor last year (she did not attend this year) and went out of their way to ask how she is doing
• The adult student who returned on the last day of the playathon – not to play – but simply to listen
• The students (children) who agreed to do interviews with the media that came to cover the event – and nailed them
• The student who entered a beauty pageant and chose Batten disease as her platform
• The boy (probably Taylor’s age or not much older) who played the Journey song “Don’t Stop Believin’ and played it a second time just for Mom, because “believe” is her favorite word
• The former (now grown) student and childhood cancer survivor who couldn’t attend the playathon but supported it from afar with a donation

Thank you to the event co-chairs, Polly Greene and Pamela Tsai, and all of the teachers for their amazing efforts on behalf of Taylor’s Tale.

Thank you also to the venues – Burrage Music Company, Hopper Piano Company, Music & Arts, Maus Piano and Organ and Ruggero Piano.

Finally, thank you to all of the students who played for using their musical gifts to give the gift of hope to children with Batten disease.

Some people find it easier to block out life’s most painful moments, but I haven’t forgotten anything about the days and weeks following Taylor’s diagnosis. I remember when Mom called the school’s leaders and tried to put into words the tragedy that had befallen our family. She told them she would understand if they no longer had a place for my sister.

But the Fletcher School did more than just accept my younger sister into their student body. They adopted her. It has been nearly six years since the administration assured my mother they would figure things out together. Today, my “little” sister is almost as tall as I am and will be 14 in August. When she first walked through the doors of the Fletcher School as a third grader, she still had almost all of her vision; on the surface, infantile Batten disease had very little of her.

Even as Batten disease continued to tighten its grip on my sister during the past several years, I never worried that the kids at school would be cruel to her. I simply worried that they would be human - that they would get caught up in their own lives, and that Taylor, blind and struggling with her speech, would simply miss the wave.

It would be disingenuous of me to claim that Taylor has had the benefit of every moment – of every memory – that her friends have experienced. I refuse to sugar-coat Batten disease; nothing about it is easy; there is no silver lining. But her friends have made every effort to illuminate Taylor’s dark world with small acts of great love. I think many adults would do well to take a lesson from the students at Fletcher who have found a way to put a smile on my sister’s face when she has every right to be angry at the world.

A few weeks ago, my parents told me the kids and teachers at Fletcher were working on a “cardio craze” fundraiser for Taylor’s Tale.  They planned to ask Andre Hairston, a local celebrity and fitness instructor who had supported our organization in the past, to lead the session.

We didn’t hear much more after that. This morning, when Dad dropped Taylor off at school, he guessed that half the student body wore purple or pink – Taylor’s favorite colors. And when I entered the gym for the event this afternoon, I walked into a sea of glitter, sparkle and love.

I can only imagine the number of inspiring stories that will continue to make their way to me in the coming days and weeks, but here are a few I heard today:

Students had to pay $5 to attend the fundraiser. But one student donated the contents of his allowance jar – over $150.

One student paid the minimum $5 to attend. The day before the fundraiser, she told one of the teachers she wanted her money back. When asked why, she produced a $20 bill. She explained that she received the money for her 16th birthday; when she realized that many children with Batten disease never get to celebrate their 16th birthday, she knew she wanted to give her birthday money to Taylor’s Tale. 

Taylor’s girlfriends danced with her throughout the entire event; when the crowd turned to face a different wall, they always made sure she faced the right way. When Andre invited the girls onto the stage toward the end of the program, they helped her navigate the stairs so she wouldn’t get left behind. 

The kids at Fletcher put on an event that took place in a school gym, lasted a mere 45 minutes and yet raised more than $3,500 in support of our fight against Batten disease. That is a lot of money. But I hope they know that more than the money they raised, the heart they put into the event – and the kindness they show toward my sister each and every day – are what define them. Today, they gave me a much-needed reminder that even in the face of great tragedy, angels are everywhere.

Special thanks to the Fletcher School’s students, teachers and administrators and Andre Hairston for staging this incredible event for Taylor’s Tale.

Near the end of the evening, my mom, dad, brother, husband and I stood together in front of all of those people. My mom thanked everyone for coming and appealed to their hearts. Lance Johnston, executive director of the Batten Disease Support & Research Association, stepped in, educated the crowd on the disease and appealed to their minds. Finally, with my brother at my side, I made at once the easiest and most difficult speech of my life. I cannot remember the words I spoke – I rarely prepare remarks in advance and did not do so that night – but I remember how they felt. After I closed, my dad, who until that moment had remained silent in the background, stepped forward and read a Father’s Day card from Taylor.

Moments later, that roomful of people donated $40,000 – capping the first of many successful evenings for Taylor’s Tale.

We called it Chapter One.

I’m battle-weary. And I know we’re on borrowed time. But I still believe. And if you are one of the 160 people who shared Chapter One with us – and you’re reading these words now, five years later – that means a part of you still believes, too. My family’s fight has gotten much tougher since that night, but on the other hand, wonderful, amazing things have happened in research, shining a bright light into the dark world of Batten disease. Much of the progress that has been made specifically in the area of infantile Batten disease – the form that affects Taylor – may never have happened if not for the generosity you showed on the night of Chapter One.

We stopped counting chapters after that first night. We don’t know how many chapters we’ll need. But we’re focused on writing the happy ending to this tale, once and for all. And we’ll do whatever it takes to get there.

View Photos from Chapter One

The course, a combination of greenway paths and suburban roads, has plenty of room for more Taylor’s Tale runners. And if you’re not up for the long race, you can suit up for a 4-mile version. However, if you can’t stand the thought of running – especially on a Saturday morning in February – you can grab a coffee or hot chocolate, wrap up in a blanket in a lawn chair on the sidelines and cheer.

No matter how you decide to spend race day, I hope you’ll consider making a gift to our Miles to a Miracle campaign in support of my run, your run or a friend’s run. Your (100 percent tax-deductible) gift will go to a great cause – Batten disease research.

To make a donation to my Miles to a Miracle campaign, click here, scroll to the bottom of the page (where it says “Support My Cause”) and enter your donation amount in the space provided. If you plan to run, you can also set up your own campaign. Doing so is easy; to find out how, contact us!

While I can’t promise I’ll run the fastest on Feb. 25, I can promise you this: I’ll run the hardest - for these 10 miles and for as long as it takes until we have answers for children like Taylor.

On the morning of July 24, 2006, my parents sat stone-still in an office in Charlotte, NC as a genetics expert explained that their seven-year-old daughter, Taylor, had been born with something called infantile neuronal ceroid lipofuscinosis (INCL), a form of Batten disease. The doctor prescribed family trips, fun activities, etc. – anything to help make happy memories while there was still time. The disorder was fatal and had no cure.

An hour later, my brother, husband and I answered my parents’ distress call and joined them at their house. While Taylor sat in her classroom at school, unaware of the tragically flawed single bead on the single gene out of the thousands of genes in her DNA, the rest of us sat on the floor of my parents’ bedroom, wrapped in each others’ arms, soaked in each others’ tears.

Another hour passed. The sun scaled the cloudless blue sky and baked the mid-summer Carolina landscape. We wordlessly walked to my SUV, drove to Taylor’s school, loaded her into the back seat and headed to her occupational therapist’s office. During her appointment, the five of us sat huddled in the car with the windows rolled down, simply unable to move. The July heat rose from the asphalt in shimmering waves. And then, suddenly, without warning, the shock that had frozen our resolve simply began to melt away.

In the immediate aftermath of the diagnosis, we’d been unable to see past the doctor’s prescribed happy memories program. Unable to believe. Happy memories are nice. But for our family, they just wouldn’t cut it. That’s why we decided – as a team – to fight the monster that haunted Taylor’s DNA. “No cure” didn’t cut it, and we made no apologies for our demanding ways. And at that very moment – in that oven-like car – the spirit that eventually became a non-profit called Taylor’s Tale was born.

How many things do we take for granted today that were once considered impossible?

Ancient Egyptians wrote of “electric fish” almost 5,000 years before Benjamin Franklin attached a metal key to a damp kite string and flew the kite in a stormy sky. About 100 years later, Thomas Edison opened a lab in New Jersey, where he built the first incandescent electric lamp. The first telegraph was an iron wire. Today, we can have conversations with people on the other side of the globe. The first computer was the size of a warehouse. Now, smartphones are more powerful than those computers.

On Dec. 14, 1903, Wilbur Wright flew an airplane over the sands of Kitty Hawk, NC for a whopping three and a half seconds. The plane was constructed of wood and canvas and had a 12-horsepower engine. 66 years later, men landed on the moon, and fighter jets flew across the sky at more than twice the speed of sound.

In the first half of the 20th century, frequent polio epidemics swept across the world, killing hundreds of thousands of people. But a vaccine developed in the 1950s reduced that number to around 1,000 per year. For much of human history, the elderly or weak had no answer for illnesses as simple as the common cold. But an accidental discovery in the 1940s – the antibiotic penicillin – has since saved millions of lives.

In 1998, two siblings were diagnosed with a rare, genetic disorder called Pompe disease. Doctors told their parents the children likely had just months to live. It wasn’t just that they hadn’t caught the disease early enough. The disease was so rare, in fact, that no scientist had even bothered to explore possible treatments for it.

Those parents were John and Aileen Crowley. Their story became The Cure, an award-winning book that later inspired the movie Extraordinary Measures. Before the story made its way to the big screen, though, it made its way to my mom, Sharon King, who shared it with a group of about 10 women – who, on a sunny day in late 2006, each took a copy of The Cure and enlisted in my mom’s newly created army with one mission: to fight Batten disease.

Years after doctors thought they’d be gone, the Crowleys’ kids, Megan and Patrick, are still fighting. And so are we.

As a matter of fact, I’ve never once looked back or considered quitting since the day my family made that promise to each other in a hot car or the day just a few months later when my mom – our fearless leader – sounded her battle cry over a crate of hardcover copies of The Cure. And while I know we have an uphill battle in our quest to save my sister Taylor’s life and make the world a better place for all those who suffer from a rare disease, I still believe.

Because to truly believe is to understand the difference between impossible and undiscovered.

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World Rare Disease Day is Feb. 29 – 30 days from today. 30 is a significant number because:

• 30 million Americans have a rare disease – that’s more than the total number of people living with cancer WORLDWIDE (28 million according to the Livestrong Foundation)!
• 30 percent of children with a rare disease will die by their 5th birthday.

If not for me, do it for Taylor.

If not for Taylor, do it for the thousands of other children who suffer from rare diseases and don’t have access to new drugs that could save their lives – not because scientists are incapable of developing those drugs, but because the current wording of a federal law makes it difficult for them to navigate the regulatory process and bring their discoveries to clinic, where they can actually help real, live people.

The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, would:

• improve access to the FDA’s accelerated approval process for extremely rare diseases
• provide a more predictable regulatory process
• decrease associated costs and spur investment in the development of treatments
• require the FDA to use the best science available, ensuring that treatments are safe and effective and reach patients sooner.

Watch the following short video message from Tracy Van Houtan, founder of Noah’s Hope – an important partner of Taylor’s Tale in the fight against Batten disease and other rare diseases – to learn more about why you should support the ULTRA Act of 2012.

In less than five minutes, YOU can help thousands of children like Taylor. Please follow the link below to contact your legislators, asking them to support a NO-COST bill that would accelerate the rate at which we are able to get lifesaving treatments to children with ultra-rare diseases. Ask your friends and family to do the same, because we need 5,000 people to sign on in support of the ULTRA Act of 2012 prior to Rare Disease Day (Feb. 29, 2012)!

Support the ULTRA Act of 2012

Note: When you click on the link, you will be redirected to the website of our partner, the Rare Disease Legislative Advocates (RDLA).

1. Enter your contact information.
2. Click the button to review and submit a message to your legislator.

*Your contact information will NOT be sold or used for any other purpose.

Visit the RDLA Site Now to Show Your Support

My mom, a neutral party by virtue of the fact that she didn’t go to Carolina or State, asked for my prediction when I mentioned the game to her on my way home from the office tonight.

I follow my own teams religiously, but I do more than just that. I read Sports Illustrated cover to cover every week. I follow the national sports tickers. I read the local sports news.

Nevertheless, when my mom asked me which team I expected to win the year’s first Carolina – State game, I didn’t make a pick.

Because you have to play the game.

People often ask me how Taylor’s doing. And almost as nearly as often as they ask, I don’t know what to say. That’s not to say that their question – their concern for my sister, for my family, for me – means any less. It just means that I don’t know the answer, at least not in the big picture sense.

I can always tell people how Taylor’s fighting. Because she’s always fighting hard. I can always tell people how she’s doing that day, though I won’t always do that if it’s not a good day. I can give them statistics and facts about Batten disease. But statistics and facts don’t have much to do with Taylor. Statistics and facts are numbers and letters. They’re not living, breathing children with laughs in throats that can’t speak and smiles in eyes that can’t see.

I can tell them that Batten disease is fatal. That once a child is born with Batten disease, a child will die from Batten disease. End of story.

But I can’t predict the future. And I’m not fighting this fight just for the hell of it.

Whether you’re talking about basketball or Batten disease, one thing’s for certain:

You can make all the predictions you want. But you still have to play the game.

3.7.07 - 1.15.12

The following appeared on the blog penned by Celia’s mom, Jenni, today:

Please, though, don’t express condolences today.  Please do this instead: Share a memory of Celia, or relate a lesson you learned from her.  Tell us about something nice, something simple but kind, that you’ve done for someone in her honor.  Give us, if you will, something to hold on to when we wish we could hold her.

Jenni and Andy – I never had the opportunity to meet Celia in person, but I feel as though I came to know her through your blog. And perhaps because you’ve always told her story so beautifully – or maybe because children like Celia and Taylor are just amazing on their own – her courage always managed to lift me up when I’d had a Batten day. Because no matter how bad things get, angels like your daughter and my sister are always worth fighting for.

I will never forget the first time we got “the call” from the West Coast, informing us that Taylor had been accepted into the groundbreaking clinical trial. Nor will I forget the call that followed shortly afterward, informing us that the sponsor of the study had changed its mind.

Just two spots remained in the study. Taylor, whose estimated 2 percent PPT1 enzyme production delayed the onset of the infantile Batten disease fatally encoded in her genes and shocked the study team with her ability to not only walk and talk but also attend school, dance to music, answer the phone, learn Braille and maintain a sense of humor sharp enough to keep adults on their toes, was just too healthy for the Phase I safety trial.

We all but gave up on spots five and six. Banking on Taylor’s minuscule enzyme production to buy us some extra time (but knowing it wouldn’t save her forever), my parents searched every square inch of the medical world as they looked for possible miracles.

Then, out of the blue, another call came. And just a few short weeks later, in early January 2008, we boarded a plane for Portland, Oregon.

Mom lived in a Residence Inn within sight of the hospital for seven long weeks that winter while Taylor recovered, but the seven days I spent in Portland for the actual surgery felt like seven weeks. Throughout my entire life, I have never experienced anything quite like that week. Time stood still, and I felt as though I was watching another family that merely looked like mine, but wasn’t really mine. Still, there are a few singular moments that stand out to me – moments that inspired feelings so real, they are the only way I can be sure the week actually happened – the images of which will be forever burned into my memory.

Around 5:30 a.m., a few hours before Taylor’s surgery, I walked up behind her in our hotel suite. She sat watching (yes, at that time, seeing) her portable DVD player – a picture of normalcy framed by chaos. The first thought that popped into my head was how beautiful her hair looked. About two hours later, all of it would be shaved off in the operating room.

Not long after they’d wheeled Taylor back to the OR, the study coordinator walked out to the family waiting area and placed a Ziploc bag containing Taylor’s hair in my mother’s hands. It sounds like such a benign, forgettable thing, but it was one of the most powerful moments I have ever witnessed.

Following the surgery, we stood outside clear sliding doors as the nursing staff tried to place Taylor’s PICC line. Still drugged, Taylor nonetheless wasn’t in the mood to be poked and prodded. We felt badly for the nursing staff, but watching her give them a hard time also caused me to smile for the first time that day; seeing some of that spunk meant we had our Taylor back.

One night, we sent Mom and Dad back to the hotel so they could get some real sleep. Around 2:30 or 3, Taylor started crying; nothing we did consoled her. We called the night nurse, who arrived immediately, pulled up a chair and held Taylor’s hand until she stopped crying, her eyelids flickered and she drifted into exhausted slumber. I will never forget that nurse. She had long, dark hair pulled back into a loose ponytail, was originally from eastern Washington and gave my little sister a night of peace.

Four days after the surgery, Taylor’s care team told us she could go back to the hotel. I never imagined a little girl could be so happy after all she’d been through. We bundled her up in her cheetah print coat, pink hat, scarf and boots and took her and her stuffed unicorn – her snuggle buddy for those difficult few days – on the wheelchair ride of her life. And as we exited the hospital, Taylor inhaled a deep breath of cold, damp air and smiled, as if to tell the world, I just made history. What else you got?

Years have passed since that singular moment in my sister’s short life, and still, Taylor continues to ask the world that same question. She’s taken a couple more hits along the way. She can’t see those movies on her portable DVD player anymore. She’s not doing Braille. But she still has one hell of a sense of humor.

I wish I could say that surgery in Portland saved Taylor’s life. Some people, in fact, actually think it did. They’ll ask me how she’s doing, and when I tell them, they’ll say, “But she had that surgery…”

That’s when I tell them what a Phase I safety trial is. And, as if that isn’t enough of a knock, I’ll remind them that Batten disease is a monster.

When we received that deciding phone call in late 2007, Portland was the best shot Taylor had. We were desperate. We didn’t know if it would work, but we also didn’t know if we would ever get another shot. And when Taylor was finally accepted, we called it a gift. But if you want to know what I really thought then – and believe more than ever today – it’s this: Taylor, and the five other children in the trial, gave the greatest gifts of all. They endured an incredibly invasive brain surgery and intensive recovery and gave the gift of hope to millions with Parkinson’s, Alzheimer’s and other far more prevalent brain disorders who will very likely someday benefit. I will never forget that week I spent with my little sister in Portland, Oregon. And I don’t want the world – or the company that sponsored a particular Phase I clinical trial – to ever forget the grand sacrifice of six very sick children.

My mother is a great storyteller. Many of the kids at the small, private K-12 school my sister attends already know Taylor and are familiar with Taylor’s Tale, the non-profit founded in her honor. So, Mom told those kids a story many of them knew, just not in a way they’d heard before. She told it in a way that only a mother who has faced a demon like Batten disease – and then dared it to keep her down on the ground –  could.

Mom told me that after she spoke, many of the kids came up to her. The boys shook her hand; the girls hugged her.

Here, I’d like to share just a small piece of the beautiful message she imparted to those kids earlier today. They’re great words to live by – no matter who you are or what you’re facing! And thanks, as always, to the world’s greatest mom for her infinite wisdom and for lending a little battery juice to me from time to time!

As for me—I’m not sitting in that chair anymore.  Hope creates energy and energy finds answers.  It is amazing what can be achieved when you choose to begin each day with your inner GPS powered-up and EXTRAORDINARY as your destination.  Never forget, though, on those days when your battery is running low, to borrow a little power from your family, friends, teachers, and others.   They will likely be more than happy to share, and when a team practices the Art of EXTRAORDINARY, well…the sky’s the limit!

Best wishes to each of you as you go after your own EXTRAORDINARY today and always!