When the Eruption is Over

Published: May 23, 2013 ~ 4

By Laura Edwards

It is not easy to paint a picture of Batten disease for people who have never seen it before. If you wish to paint with a large brush, you can tell them that children born with Batten disease never survive it; that it is total destruction; like a molten wave of lava and volcanic rock and ash.

Batten disease is not easy for most people to understand, but everyone can see that Taylor is blind. The destruction reached her eyes first. They are still beautiful and rare, the color of the caramel inside a Milky Way bar and framed by impossibly long lashes. But they lost their sparkle long ago.

Five years ago this past January, a clinical trial coordinator brought my sister’s honey blonde hair to us in a Ziploc bag as we waited in a chilly waiting room in Oregon, thousands of miles from our home on the East Coast. Down the hall, a surgeon drilled eight holes into my sister’s skull and gave her hope. Not life, but hope.

For the next several years, my parents and Taylor made frequent return trips to Oregon. Once, they rented a car and drove south to Crater Lake, one of our country’s pristine natural wonders.

More than half a century ago, Freeman Tilden, said to be the grandfather of park interpretation, wrote a text, “Interpreting our Heritage,” that is still used to educate rangers today. One of the essays holds special meaning for us.

The essay, “That Elderly Schoolma’am Nature,” tells the story of a park naturalist meeting a man just inside the rim of Crater Lake. The naturalist can sense that something is different about the visitor from the moment he sees him but only comes to the determination that he is blind after noticing the man’s very dark glasses and putting all of the clues together.

And then, the visitor asks the naturalist to describe the lake to him. But how do you describe one of the world’s most stunning lakes to a man who cannot see?

The naturalist asks the man to take off his gloves, so that he can take his hands and move them around the crater model and describe its shape and depth and skyline and the curious, cone-shaped island in the middle. But how do you describe the blue of its water – a blue that has no equal – to someone who has not seen blue in many long years?

The visitor remembers the blue of the sky from his childhood. The blue of Crater Lake is nothing like the blue of the sky. But in his mind and his heart, he experiences the wonders of Crater Lake more fully than the naturalist could have ever imagined. And as he walks away, the naturalist realizes that the visitor “had extended his power of seeing – which was an achievement beyond price,” and that “We are all of us somewhat blind, even those who believe their eyesight is faultless.”

I love so many things about this story. My dad, who shares my love of national parks, gave a copy of it to Mom and me several years ago, and I’ve held onto it ever since. And my wise mother, who now leads Taylor’s Tale into an exciting future of new partnerships and boundless possibilities, shared Tilden’s essay with me again this week, urging me to apply the story toward our journey in our fight against Batten disease.

“We are all of us somewhat blind, even those who believe their eyesight is faultless.”

Because, as Mom reminded me, we embarked on this journey with our eyes focused directly on beating Batten disease. Our experience, though, has afforded us peripheral vision. We now understand the connection between all rare diseases – so many of which do not have a single approved treatment – and the millions battling for their lives. And just as the park naturalist and the blind man learned from one another, we, as fellow fighters and advocates, can learn from each other and support each other – and by doing so, we can become more efficient and effective. We will never reach our goals if we fight our battles in our own disease silos.

There is a very rare disorder called giant axonal neuropathy, or GAN. It is an inherited, recessive disease that first appears in early childhood. It results in nerve death and quadriplegia, and it is always fatal. The incidence is unknown, but it probably affects fewer than 100 people in the world.

Undeterred by these odds, the family of a little girl named Hannah decided to fight GAN head-on. In 2008, Lori and Matt Sames founded Hannah’s Hope Fund in their daughter’s honor. That same year, Hannah’s Hope began funding gene therapy for GAN at the University of North Carolina Gene Therapy Center under Dr. Steven Gray. The clinical trial is expected to begin later this year.

Two months ago, Taylor’s Tale and five partners announced funding for gene therapy for infantile and late infantile Batten disease at UNC, also under Dr. Gray. Our project is following in the footsteps of the GAN work that is on the brink of clinical trial. And Lori’s fight for her daughter could very well help lead to a treatment for kids like my sister. Dr. Gray plans to use the same gene vector and methods to treat Batten disease. And if the GAN trial is successful, we will, in Lori’s words, “move like wildfire to apply this to the lives of children with Batten.”

“…move like wildfire to apply this to the lives of children with Batten.”

Together, we can reach our goals. There are so many of us in the rare disease community, and there is strength in numbers. That is an advantage, but it is also the saddest thing of all. There are TOO MANY of us. We’ll change that when we play to our strength by finding treatments for people like Hannah and Taylor.

I think about how the landscape in central Oregon must have looked on the day of the volcanic eruption that created the most beautiful lake in the world. I know that many dedicated people, from the team at UNC to those working to ensure that their science is supported, will move like wildfire to outrun the death and destruction of diseases like Batten and GAN.

And every night, when another day’s work is done, I dream about how beautiful the lake can be when the eruption is over.

The Advocate

Published: May 15, 2013 ~ 0

By Laura Edwards

The American Society of Gene & Cell Therapy’s annual conference kicked off early this morning in Salt Lake City, Utah. Taylor’s Tale is co-funding gene therapy for infantile Batten disease at the University of North Carolina, so the conference made our short list of “meetings to attend.”

The timing posed just one logistical problem: my father’s brother passed away last Tuesday, and the memorial service was scheduled for this afternoon.

After much soul-searching, Mom let Dad and Taylor put her on a plane bound for Salt Lake City yesterday evening. The minister gave a beautiful service, Dad and his surviving brother shared beautiful words, and Mom’s angel friends and the ladies of the church took great care of everyone. And two time zones from home, Mom did what she does best: save the world, or at least make a good bit of progress.

Fighting Batten disease and being an advocate for a rare disease community of 350 million people is a hard job, especially on top of caring for someone with a life-threatening illness. It’s a full-time job. And Mom, as dedicated as she is to Taylor’s Tale and all that we stand for, will always tell anyone who asks that she’s Taylor’s mother first. Taylor and her classmates have a dance at school on Friday. Before she left town, Mom took Taylor shopping for a dress; yesterday, she left the dress along with the perfect necklace and pair of earrings where Dad could find them. I’m certain that she’ll be sad Friday when she opens her eyes in a hotel room in Utah and pictures Taylor getting ready for that dance and knows that she can’t be there to give her a hug. I know she wanted to be there for my dad this afternoon when he read the words he wrote for his little brother.

But sometimes, saving the world means making tough choices. And this week, Mom’s making the kind of progress we dreamed about when we founded Taylor’s Tale in a Charlotte living room. She’s making the kind of difference I told her we could make – she could make – one night in the summer of 2008 when I stopped our walk in her neighborhood to make a short but passionate speech about how our effort needed to become a public charity.

We’re on the verge of something great, but we haven’t won. Which means my mother’s not done fighting yet. And I wouldn’t trade her for anyone else in the world.

What Drives Me

Published: May 2, 2013 ~ 0

By Laura Edwards

Tonight marked the fifth annual meeting of the board of directors of Taylor’s Tale. I slid behind the wheel of my car at 9 p.m. – almost three hours after I pulled into my parking spot and long after a faded sun dipped behind swollen, purple clouds outside the windows in the board room.

Four-plus years have passed since we became a public charity; six-plus years have passed since we declared war on Batten disease. The discussion at tonight’s meeting reflected the incredible progress that has been made since my mom placed a bulk order for copies of The Cure, Geeta Anand’s stunning account of how John Crowley raised $100 million in an effort to save his children from Pompe disease, and distributed them to a small battalion of hand-picked soldiers in a Charlotte living room in the fall of 2006.

Tonight, my mom sat at the head of a board room table to deliver her updates. Some of the faces around the table were the same; some of them were different.

One month ago, Mom attended the first Southeast Venture Philanthropy Summit in Chapel Hill. Other attendees included the Michael J. Fox Foundation, the Gates Foundation and sleek biotech companies of all shapes and sizes.

Three days ago, Mom and two other board members toured the University of North Carolina’s Gene Therapy Center Vector Core – the most advanced facility of its kind in the nation. Down the street, one of the nation’s top gene therapy experts, Dr. Steven Gray, is leading a two-year gene therapy study for two forms of Batten disease that is partially funded by Taylor’s Tale. If successful, the work could lead to a human clinical trial in just a few short years. And as much as we want this for Batten disease, it’s much bigger than that. If Dr. Gray gets this to work, it can treat a lot of people with all types of problems; the principles can be applied to many other diseases – from Parkinson’s disease to ALS (Lou Gehrig’s disease) to Alzheimer’s disease…I could go on. And not only that, but it will be a one-time, low-cost, minimally invasive treatment as opposed to life-long, expensive, potentially invasive treatments that – in many cases – address some of the symptoms but don’t treat the disease.

Seven years ago, I was learning the ropes of healthcare marketing and PR, coaching a girls’ soccer team, covering sports for the local paper and planning a wedding. I had a half-finished young adult novel and figured I’d get to it as soon as the honeymoon ended.

That all changed when I got the phone call.

Google “neuronal ceroid lipofuscinosis” and skim the search results. That’s how I first learned about our new world – and Taylor’s – on July 24, 2006, sitting at my desk at work, with my sobbing mother on the other end of the phone line.

The geneticist who diagnosed my sister said we shouldn’t bother with hope. My response from day one was “Screw that,” but fighting is easier said than done. It’s never been easy.

We’ve lost so much since that day.

But I’m proud of what we’ve achieved. Mom’s reports at tonight’s Taylor’s Tale board meeting embodied all that our team has accomplished and the astounding impact we stand to have.

Our fight began because of our love for one little girl. In those early days, we saw the love and the laughter and the courage that we so cherished about Taylor embodied in all of the children fighting Batten disease, and we fought for them too.

As we forged on, we learned more about the impact of rare disease: 30 million people in the United States – and 350 million worldwide. We realized that we could be doing more with the incredible scientific innovation we already have. We partnered with or endorsed organizations like the Global Genes Project and the EveryLife Foundation and went to Washington to lobby for all those fighting a rare disease.

And as we learned more and more about the wonders of gene therapy and the incredible people behind it, we realized that we could be part of something bigger than we ever imagined.

The possibilities of the immediate future and these next few years are boundless, and my mind races as I think about the impact we – the little group called Taylor’s Tale that my mom and I and a group of women who don’t like to take “no” for an answer founded in a mishmash circle of couches and ottomans and chairs over pimento cheese and egg salad sandwiches – could have – directly or indirectly – on millions of people.

That’s what drives my mind.

But in my heart, I’ll always be driven by my love for “T.”

Magic Carpet to the Stars

Published: April 29, 2013 ~ 4

By Laura Edwards

My sister, Taylor, was diagnosed with infantile Batten disease on a blistering summer day in 2006, just 26 days before her eighth birthday. I wasn’t in the room with Mom and Dad when they received the news, but I’ll never forget the geneticist’s words to them:

“Take her home and love her. Make happy memories together. That’s all you can do.”

In the worst hour of our lives, we learned that my bright-eyed, golden-haired, intelligent sister – a second grader who loved to sing and dance and run and play – would go blind, have seizures and lose the ability to walk, talk and swallow food. She would deteriorate such that she would be confined to a wheelchair. She would have to have a feeding tube. Eventually, she would die – blind, bedridden and unable to communicate.

For a long time, we refused to condemn Taylor to the horrible fate encoded in her genes. We vowed to fight like hell for my sister – and in the process, for others like her. We never questioned the need to make happy memories with my little sister – we watched the lights of those once-bright eyes fade a little more with each passing month – but we knew that wasn’t ALL we could do.

On Dec. 7, 2006, Taylor, my husband and my grandparents climbed into my Ford Explorer in our driveway in Charlotte. I loaded a Harry Potter audio book into the CD player and pointed the SUV south for Orlando, FL, where my parents were wrapping up a crash course on lysosomal storage disorders at their first research conference and my sister’s dream of seeing Cinderella’s castle and meeting all of the Disney princesses awaited.

At the end of our 600-mile journey, we pulled into Disney’s Port Orleans Resort and collapsed into our beds.

The very next morning, we had breakfast with the princesses inside Epcot Theme Park. Taylor collected all of the royals’ autographs inside a pink and purple autograph book and smiled starry smiles whenever the princesses hugged her and crouched down to whisper secrets in her ear. She got a huge, plush “Dale” hat in honor of her big sister (I’ve had a thing for Chip and Dale since preschool) and giggled at her Papa Jerry’s silly skull hat. She marveled at the giant Christmas tree and climbed to the very top of Peter Pan’s tree house. In the Magic Kingdom, she clapped to the “thump” of the music at the daytime parades and squealed on the peaks and valleys of Space Mountain and Thunder Mountain. She sat on Santa’s lap and asked for reasonable gifts, like new Disney DVDs and pink hula hoops. She called out the colors of the Christmas lights that decorated the floats of the nighttime parade and lifted her face up to the fireworks that painted the sky over Cinderella’s castle.

We spent just two full days in the parks, but we packed a lifetime of memories into those two days. We walked those enchanted sidewalks as anonymously as the thousands of other faces there to enjoy their wonders. We made that time ours – and Taylor’s.

Today is “World Wish Day;” it marks the day that the first child received his wish to be a police officer for a day, inspiring the founding of the Make-A-Wish^® Foundation. The Make-A-Wish website states that it has fulfilled the wishes of more than 300,000 children with a life-threatening medical condition.

My sister isn’t among them.

I think that Make-A-Wish is an incredible organization and know that they have brought happiness to many children and families. It just wasn’t for us. Perhaps if we’d called the team at Make-A-Wish when we decided to take Taylor to Disney World in 2006, we could have stayed for longer than two days. Maybe we could have dined with Cinderella in her castle instead of the cute Norwegian banquet hall in Epcot. Maybe we could have stayed at the Polynesian instead of the Port Orleans. But while we all knew, deep inside, that we threw the trip together when we did to give Taylor a chance to see Disney while she still could, for those two days, Batten disease was out of our minds – at least as much as was humanly possible. For two days, we were just a family that loved each other, a family on the trip of our lives.

On our second and last night, we stayed in the park long after the last Christmas parade float disappeared around the bend and the last firework sparkled and died over the gleaming turrets of Cinderella’s castle. Just before the park gates closed, we took Taylor back to her favorite ride, Aladdin’s Magic Carpet.

As the attendant invited my sister and me into the circular ride to select our magic carpet, Aladdin and Jasmine appeared at the gate.

My sister stopped in her tracks. She stared at the two characters, spellbound. She’d seen them, or other actors in the costumes, numerous times in the parks over the past two days – but this was different. Aladdin and Jasmine were there to ride their magic carpet ride, and we were the only other visitors in sight.

I watched as the two bent down to hug Taylor and invited her to ride with them. My sister could only nod and take Aladdin’s hand as he led her to one of the magic carpet cars. And for the next 10 minutes, the attendant let my sister and me ride that magic carpet with the prince and princess, over and over again, as “A Whole New World” played in the background. When our dream ride came to an end, the valiant prince gave my sister a kiss on the cheek.

If we were to go to Disney World today, my beautiful, sweet sister would not be able to see any of its wonders or walk its paths without a lot of assistance. She’d get tired. We’d have to make frequent medication stops. She might smile for the camera, but she wouldn’t know where to look. She couldn’t sing along to her favorite songs or ask her favorite princesses for autographs.

We still haven’t called Make-A-Wish. But on one enchanted evening, my sister and I rode a magic carpet to the stars. Nothing – including Batten disease – can take that away from us.

The Center of the Earth

Published: April 25, 2013 ~ 2

By Laura Edwards

Scaling a mountain is a popular metaphor for overcoming a great challenge. Well-meaning friends have compared our family’s fight against Batten disease to scaling a mountain.

But on a clear day, you can see the top of a mountain. And thousands of people have reached the summit of Mount Everest, the world’s highest peak at over 29,000 feet. If I had the desire to climb Everest (I don’t), someone could tell me how to do it. Even Edmund Hillary, who made the first known successful ascent, had Tenzing Norgay, a Nepali sherpa climber, to guide him to the roof of the world.

Fighting Batten disease isn’t like climbing a mountain. It’s like traveling to the center of the earth.

No one can tell us which way to go. No one has been there. Though my sister is far from the only person with Batten disease, she, like all others with a terminal illness, travels a path that is hers alone. We, like all those who love someone shackled by a monster like Batten disease, travel a path cloaked in shadows; a path for which there is no map; a path that had a hopeful beginning but no defined end.

The center of the earth is not a nice place to visit. Conditions are so excruciating that they can’t be replicated in a lab. The mantle is like a huge mountain range turned upside down, heated up and shaken, which causes constant avalanches. The outer core is molten iron. Deeper, the pressure is so intense that iron solidifies, even though the inner core is believed to be hotter than the surface of the sun.

As we hurdle downward on our journey – through cascading, rocky peaks, churning lava and broiling metal – we have to make lightning-quick adjustments. We have to change equipment. Sometimes, we don’t have the right equipment for the situation – but we have to forge on anyway. Some days, we suffer first-degree burns. Rarely do we suffer a wound that won’t heal. But in the center of the earth, permanent scars are facts of life.

The center of the earth is a dark place, and you never know what you’ll find around the bend. I fight this fight like it means life or death – because it does – and sometimes, I wonder, “When we get to the end, is it gonna be worth it? What’s at the end? Is the ending of OUR story the ending of THE story, for us?

Most journeys, like most decisions to scale a mountain, are chosen. We didn’t sign up for this trip. But we’re on it, and there’s no turning back.

Buried at the center of the earth is a giant crystal. If brought to the surface, it would stretch across more than half the continental United States.

Even the most hellish journeys have hidden wonders.

Full of Wonder

Published: March 31, 2013 ~ 0

By Laura Edwards

We spent many of the Easters of my childhood on Oak Island, a marshy finger of land sitting in the Atlantic Ocean just off the southern tip of North Carolina. My grandparents built a cedar shake house about a mile from the beach, on a scrubby patch of land on 48th Street – a long, residential road that ends at the Intracoastal Waterway. They never poured a driveway, so when my brother and I hopped out of the car after excursions to the beach or the town park, we often found ourselves ankle-deep in thick, dark gray sand teeming with fire ants.

In those days, Oak Island wasn’t a tourist destination and had a small, mostly older year-round population; it didn’t boast many restaurants, much less churches. So to celebrate the holiday, my Presbyterian family and I donned our Sunday best and drove to the Baptist church at the corner of our street and the island’s main road. After the service, we changed clothes at the beach house and went to the park, where Mom and Dad and our grandparents hid eggs we’d helped them hard-boil and dye in every color of the pastel rainbow in the airy kitchen with the vaulted ceiling the night before.

These are the memories that define Easter for me. I realize only now, as I share them here, that my sister Taylor isn’t in any of them. The last picture of the beach house that I remember is of my mom – eight months pregnant with Taylor – in the sun room where I sat at the white desk to draw pictures and curled up on the love seat to lose myself in a story after a sun-drenched day on the beach. My grandparents had to sell the house that year. It was an “adult” thing that I didn’t notice at the time or understand after it was over, even after I’d had time to dry my tears.

It’s been nearly 15 years since the beach house changed hands, but I still miss it. Even more than the house, I miss the way of life that’s disappeared in recent years. The house itself had its imperfections; at 1,500 square feet, it didn’t have enough bedrooms to hold our extended family, and it never stayed cool during the brutal summer months. The blue vinyl couches in the living room made you sweat even if icicles hung from the porch railings outside. We didn’t have a first row or even a third row view of the ocean; 48th Street runs perpendicular to the ocean road, and our neighbors across the street had an odd affection for plastic yard ornaments. And those fire ants…

But I’ll never forget our late-night egg-dying sessions or our private Easter egg hunts in the park; Fourth of July fireworks on the Cape Fear River in Southport, just across the bridge on the mainland; picnics in the wind-beaten cabana on the Oak Island beach; family baseball games at the town’s baseball diamond and the satisfaction of knowing that I had the coolest grandmother in the world as I watched her run the bases after hitting the ball into left field; walking to the end of 48th Street in the hours before dusk to find my favorite rock perched on the shore of the Intracoastal, scribble stories in a worn spiral notebook and shape my dreams.

The meaning of Christmas, the holiday that celebrates the birth of Christ, is easy for most people to understand. But a lot of people lose perspective when it comes to Easter.

Easter, the holiday that coincides with the arrival of spring, celebrates the resurrection of Christ. But in simpler, more universal terms, it celebrates new life.

We’ve lost so much since the days of the beach house. My grandmother, the matriarch of our family, passed away on Christmas Day 2012, but we lost much of her to a monstrous brain disease called Lewy body dementia long before that. Taylor, absent from all of those happy Oak Island memories, began with a life that seemed full of promise. She has lost more than all of us.

But in the wake of heartbreak, new hope still emerges. That is the miracle of life. And I understand now that THAT is the miracle of Easter – that it’s possible to BELIEVE even after a tragedy. God’s greatest miracle was the resurrection of Christ and the gift we received – eternal life.

Batten disease is senseless. It’s terrible. It’s tragic. It’s winning the battle for my sister’s life here on Earth. It’s stolen so much – priceless pieces of Taylor that we’ll never get back; pieces of ourselves, stripped away by the pain of being faced with losing someone you love to a monster like Batten disease; and most of our energy as we battle it day in and day out to give hope to future Taylors.

But we live in a world full of wonder.

Tomorrow is a new day.

I believe.

I Give it an ‘A’

Published: March 28, 2013 ~ 0

By Laura Edwards

Each February, students of all ages dedicate their precious weekends to play music in my little sister’s honor and raise money and awareness for Taylor’s Tale and our fight against Batten disease.

Polly Greene, my late grandmother’s best friend and a beloved family friend and piano teacher, founded the piano playathon in her personal studio in 2008.

Co-chair Pamela Tsai and other teachers joined Polly’s effort, and the event outgrew her home by year two. Last month, the fifth annual playathon for Batten disease featured 120 students of 17 teachers. They played at three venues in Raleigh, NC and raised about $2,500 for Taylor’s Tale. The event has been covered by multiple TV news stations, including this feature story by UNC-TV.

This is Polly with Emma Ogden – one of her students. Emma loves playing in the playathons. She chose Taylor’s Tale as the topic for a school project; she put 100 percent effort into researching Batten disease and our story on her computer and created this beautiful poster.

We’ve had events and campaigns that have raised more money than the piano playathons.

But these students and their teachers have helped us share our story with a lot of people; I can’t put a price tag on that.

And nothing touches my heart – or fuels my fire to keep fighting the monster – more than angels like Emma. There’s just nothing like kids helping kids.

March of Madness

Published: March 18, 2013 ~ 1

By Laura Edwards

I’m a North Carolina native. Most of us harbor an unwavering devotion to one of two major state universities located in the Research Triangle – the University of North Carolina at Chapel Hill (UNC) and North Carolina State University (NC State).

Laura's graduation day

I earned my degree in English from UNC. I love the school for the fabulous education I received – something no one can ever take away from me. I love it for its particular shade of blue. I love it for the bell tower that watches over South Road and the football stadium. I love it for the pink azaleas that ring the Old Well each spring. I love it for the Forest Theatre, where a group of upperclassmen blindfolded me and walked me through an honor fraternity’s initiation ceremony after dark. I love it for the basketball team (I even loved them when they went 8-20). I love it for the frozen yogurt and NY pizza on Franklin Street, the town’s main drag. I love it for my favorite spot on campus – a sidewalk between the Wilson and Undergraduate Libraries that, three seasons out of the year, is shaded by a small tree. In the fall, that tree’s leaves turn a brilliant shade of gold, and in the late afternoon, the sunlight shines down and hits those leaves, and the glow lights up the entire world. And most of all, I love it for the friends I will have for a lifetime.

I spent the second semester of my freshman year at NC State. I love the school for its wonderful people, who rolled out their Wolfpack red carpet for me in my time of greatest need. I love it for the grassy hill behind the humanities building where I ate lunch on most sunny days. I love it for the memories of tailgating with my family of NC State grads and going to Carter-Finley Stadium for football games. I love it for Mr. and Mrs. Wuf – with deepest apologies to my alma mater, they’re cooler mascots than Rameses the ram. I love it for the week I spent playing as a scrappy point guard at the late Kay Yow’s basketball day camp in the sweltering but tradition-laden Reynolds Coliseum and making memories with my late grandmother each night after the gym lights went out. I love it for the great week I spent at the school’s soccer camp with my best friends and teammates from my high school years. I love it for the men’s basketball teams of my childhood – I wanted to marry the point guard, Chris Corchiani, and idolized the cheerleaders. I love it for memories of watching those games with my dad, an alum. I love it for the creative writing class I took on its campus – my first as a college student – where I had a teacher who believed in me and helped me build the confidence I needed to hold onto my lifelong dream.

I wish my little sister, Taylor, had a chance to go to college. I’d give anything to see her in Carolina blue, Wolfpack red, or any color her heart desired. I wish she had that luxury. I realized too late that my stints on both campuses were just that – luxuries. I’ve learned the hard way – by watching my sister’s decline since she was diagnosed with infantile Batten disease nearly seven years ago – that dreams cannot always be earned.

People sometimes ask me why I continue my March of Madness. They say that I should just enjoy the time we have left.

But if I quit – if we all quit – kids like Taylor will never walk the path I walked or live the dreams I lived.

They’ll always lose.

And so I keep on playing this crazy game. Call it fear, call it courage, call it faith…call it whatever you want. But I believe.

The whistle hasn’t blown. I’ll play till I can’t play anymore.

All that is Good

Published: March 3, 2013 ~ 2

By Laura Edwards

This morning, Mom called and told me to turn on the TV to catch a story on CBS about a high school student with a developmental disability. Mitchell, whose mother sat on the Association of Junior Leagues International Inc. (AJLI) board with Mom and still keeps in touch, loves basketball more than anything and serves as his school team’s student manager.

Before the last game of the regular season, Mitchell’s coach told him to dress out. Just wearing the jersey would have been enough for Mitchell, but his coach planned to play him. And with 90 seconds left, he put him in. But no matter how many times his teammates got him the ball, he couldn’t score. That’s when something amazing happened. With seconds left, a player on the opposing team in-bounded the ball to Mitchell. Mitchell took one dribble and launched the ball into the air; time stood still as it floated above the basket and dropped through the hoop for the last score of the game. It didn’t have the drama of a game-winning shot – the final margin was 15 points – but the bleachers emptied, and the home crowd carried Mitchell off the court.

Watch Mitchell’s Story

I can’t count the life-changing moments my little sister has experienced thanks to kids just like Jonathan – the opposing player who passed the ball to Mitchell.

Taylor’s girlfriends at the Fletcher School, the small, private institution she attended for six years, made sure she had a place at their lunch table, even though she couldn’t always keep up with their conversations and needed help finding items in her lunch bag.

They made a place for her in the talent show each winter.

They kept her in the thick of the action at the school dances in the cafeteria.

All of the boys – and one in particular – made her feel like Cinderella at the ball.

They never teased Taylor when she began using a cane to find her way around the hallways and classrooms at school.

Her Girls on the Run teammates cheered her on to two 5K finishes. On the day of the team’s practice 5K before the first race of the year, everyone joined Taylor on the track for her final lap.

They included her in every photo op.

They took her out for nights on the town.

To help the adults fight Batten disease, Taylor’s friends organized fundraisers for Taylor’s Tale.

They threw a PJ party on a school day…

…organized a bake sale…

…designed an online campaign…

…and engineered a cardio craze dance fest with a local celebrity and LOTS of pink body paint and glitter.

Kids aren’t perfect. Some of them are bullies. But the kids who’ve come in and out of Taylor’s life over the years have had an uncanny knack for putting a big smile on her face and making her laugh. And I’m not sure if I could find a doctor willing to back me up, but I think all that love and joy have a positive effect on her physical health. If not for the pint-sized angels in Taylor’s world, I don’t know where she’d be today.

Batten disease is all that is evil.

The kids who have touched my sister’s life are all that is good.