Endurance

Published: March 25, 2013 ~ 5

By Laura Edwards

In the days, weeks and months that first followed my little sister’s infantile Batten disease diagnosis, we operated on overdrive. Our determination to win for Taylor fueled our fight. When we looked at her – the golden-haired angel who lost her way in the dark and struggled in math but seemed perfect in every other way – we clawed for a branch or a rock to grasp as our world fell away beneath us and everything we’d ever known – everything we’d ever taken for granted – slipped away.

We were angry; scared; defiant; we knew the facts and the statistics…and still, we dared Batten disease to take Taylor away from us. We gave new meaning to the word “believe.” We rallied friends and family to believe with us. We raised more money than we ever thought possible. We shared Taylor’s story till it reached all the developed continents of the world. We learned more about fatal diseases than we ever wanted to know.

But a second wave always follows the first. The best sprinters in the world can only sprint for so long. And that second wave brought real fear; the kind that isn’t fueled by adrenaline; the kind that comes from knowledge; the kind that doesn’t go away overnight.

This is a journey – not a sprint.

Taylor's first 5K

Batten disease will soon steal Taylor’s ability to walk. But my little sister used to run.

Taylor ran her first race on a chilly December morning in 2008, just 11 months after she endured invasive, experimental brain surgery in a hospital thousands of miles from home. I played cheerleader; an oft-injured soccer player, I didn’t do races.

After watching my little sister run across that finish line, I signed up for my first race.

One year later, I returned to the site of that shared moment to run my first half marathon in her honor.

Tar Heel 10 Miler

Since then, I’ve traded my soccer cleats for running shoes and hit the road for good. Last year, I ran over 1,000 miles – and I took every step for my sister. The way I see it, running is one of the many gifts Taylor gave to me. I don’t drink. I don’t smoke. I tried private therapy, but I didn’t like having to talk about Batten disease at predetermined times. Instead, I spend time with the people I love, I blog, and I run.

So I face this thing called Batten disease each day. It’s a test of endurance. I’ve learned to face it in chunks. I don’t think about a long race in terms of the total number of miles. I think about running a great two miles – or whatever distance lies between each aid station. In the same way, I try to focus on having good days. When I tried to fix everything about Batten disease, I felt like I couldn’t win – for Taylor or for the larger mission of Taylor’s Tale, the non-profit organization we founded in her name. But I figure that if I face “it” in small pieces, I can string together some good days. I can focus on recognizing miracles – both large and small.

It might just be that a “small” miracle is all we need.

I still believe.

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.

Miracles Come in All Shapes and Sizes

Published: March 17, 2013 ~ 2

By Laura Edwards

At some point, most of us have children; though I haven’t arrived there yet, I will. We dream big dreams for our sons and daughters. We expect that they will be born healthy. We don’t expect that their lives will be perfect; we assume that they will get nasty colds and strep throat, bruises and scrapes, and even a few broken bones. We expect that they will be smart and do well in school but that we may have to give them a nudge every once in awhile to remind them to give it their all. We expect that they will grow up to be healthy and strong and fill their lives with whatever it is that will make them happy and make us proud.

But life doesn’t always work that way.

In 2008, a friend and his wife celebrated the birth of their first child, a beautiful boy. Their celebration was interrupted, however, when doctors at the hospital discovered that their son had the very worst congenital heart defect – hypoplastic left heart syndrome. And so, instead of taking their son home, they said goodbye to him as a team put him into a contraption that looked like an infant-sized spaceship and sent him to another hospital in Atlanta – four hours away – that specialized in caring for children with hypoplastic left heart syndrome. Then, they climbed into their car, pointed it south and followed their son’s spaceship to Atlanta, not knowing what awaited them upon their arrival later that night or in their future as a family. Their newborn son had the first of three major heart surgeries during that first stay in Atlanta. Today, he’s a true miracle: a bright, energetic kid with half a heart and a whole lot of love. His future – just like yours – is still unknown. But his present is worth living for.

Thirty-one years ago, a slender 24-year-old gave birth to a nine-pound, four-ounce baby. During the delivery, the baby suffered a severe brain injury. No one knew that at the time, though; it wasn’t until later that the mother noticed that something wasn’t quite “right” about the baby. Then, the seizures started. Before long, a neurosurgeon operated on the baby to place an intracranial shunt. The baby would likely have the shunt for the rest of her life, he said. But the baby caught a staph infection, and the surgeon had to remove the shunt. And for reasons that are still not understood to this day, the baby got better.

That baby was me. I never had to have another shunt, and I never had another seizure. I still have chronic migraines, but I earned good grades in school and had success as an athlete. The neurosurgeon who saved my life still calls me the “miracle baby.”

In 1998, my mom had her third child – my sister. We joked about the easy delivery and recovery. Taylor, the picture of perfect health, came home within days of her birth. Mom – the quintessential overachiever – went back to work the next week. Within months, my sister had the world wrapped around her little finger. By age 3, she could read. She was whip-smart, beautiful and spunky. She was anything but a child with a fatal disease.

And yet…that’s what she had.

In July 2006, our world came crashing down. A geneticist confirmed that a problem with a particular gene out of the 20,000 to 30,000 genes in my sister’s DNA gave her infantile Batten disease.

In the near-seven years since we learned about my “perfect” little sister’s cruel fate, we’ve learned the meaning of small victories – like hearing Taylor laugh or, in more recent months, hearing her speak.

We’ve learned the meaning of living life day by day, rather than year by year…because we can’t count on next year.

We’ve learned to live for small miracles – such as my sister’s 5K race finishes or the true friends who’ve never left her side.

We’ve learned that nothing in life can be taken for granted.

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.

World Rare Disease Day 2013

Published: February 28, 2013 ~ 0

By Laura Edwards

This morning, about 80 people joined Taylor’s Tale as we recognized World Rare Disease Day and made an exciting announcement about the fight against Batten disease.

I shared our family’s journey and introduced our featured guest. Following is a modified version of my comments.

My “little” sister is 14. We’re the same height.

But I still remember the day she came home from the hospital. I raced my then-best friend and now-husband up the stairs to peer over her crib (he got there first).

I remember how my sister learned to read as a toddler.

I remember 5-year-old Taylor. She seemed perfect. Beautiful. Intelligent. Healthy. Spunky. She kept our brother on his toes. The world – and Stephen – were hers to conquer.

But 6-year-old Taylor couldn’t handle first grade math. Addition and subtraction left her in tears.

Seven-year-old Taylor couldn’t find her way in dim places.

Just three weeks before my sister’s eighth birthday, a monster called Batten disease burst into our world and shattered it into a thousand little pieces.

Batten disease is a rare, inherited disorder that affects mainly children. To get it, kids have to inherit a “bad copy” of the gene from each of their parents. I got one good copy and one bad copy, so I’m a carrier; that means that I’m healthy but could pass the gene on to my children. My brother is a carrier, too.

Taylor got two bad copies.

With one roll of the genetic dice, our little sister got a fatal disease.

Fourteen-year-old Taylor lives in a world that’s always dark. She can’t learn like other kids. She has seizures. She loves to sing, but soon, Batten disease will steal her speech. Even now, she only has a few words. I can ask my sister if she had a good day at school, but we can’t talk about it.

Taylor ran two 5K races with the help of a sighted running buddy through the Girls on the Run program at her school. But that was four long years ago. Soon, my sister will be in a wheelchair.

Batten disease steals the lives of children.

It upsets the natural order of things.

Children aren’t supposed to have their dreams snatched away from them by a monster like Batten disease.

They aren’t supposed to die.

Taylor was diagnosed with infantile Batten disease on July 24, 2006.

I still remember the long moment we all shared in the floor of my parents’ dark bedroom; wrapped in each others’ arms; soaked in each others’ tears.

The doctor who delivered that news told my parents to take her home and make happy memories.

We don’t have anything against happy memories. But while Batten disease is in our DNA, going down without a fight is NOT.

Every day with Batten disease is a hard day. Still, in the near-seven years since the day our lives changed forever, we followed the doctor’s orders. We made our fair share of happy memories.

But we made time for fighting, too.

With the help of good friends, we founded a non-profit organization. We raised nearly half a million dollars for potentially life-saving research and promoted awareness of Batten disease. We advocated for increased support for the rare disease community.

We partnered with other groups that share our mission; American organizations such as the Batten Disease Support & Research Association and EveryLife Foundation for Rare Diseases, and international organizations such as the Global Genes Project.

And along the way, we met MANY families like ours.

One in 10 Americans suffers from a rare disease.

Chances are, you know someone fighting his or her own battle.

To borrow words from my mom, diseases like Batten are rare…but hope should not be.

That’s why I’m pleased to share reason for new hope with you today.

On behalf of Taylor’s Tale, I’m excited to announce that we’ve joined an international coalition of organizations founded by families like ours – families that refused to go down without a fight.

Together, we’ll fund gene therapy for two forms of Batten disease. This revolutionary work will take place right here in our home state at the University of North Carolina at Chapel Hill. The goal of this study is to pave the way for a human clinical trial.

I’ve watched this disease try to rob Taylor of EVERYTHING. I’ve prepared myself for the reality that I will likely outlive my little sister.

Bottom line – I HATE Batten disease. But in seven difficult, painful years, I’ve witnessed great progress. I’ve NEVER stopped believing.

And I believe in the ability of THIS project at UNC to help save the lives of children like Taylor.

Its leader is an expert in AAV vector design and gene therapy. He graduated from Auburn University and earned a PhD from Vanderbilt University. He completed a postdoctoral fellowship at UNC, specializing in central nervous system gene therapy. His work focuses on the development of treatments for neurological diseases. He’s been published in multiple journals and mentioned in high-profile publications and blogs. His work is chronicled on the pages of a 2012 book that explores gene therapy as the next frontier through the stories of real patients and families. The doors of his lab are decorated with photos of the children for whom he and his colleagues go to work every day.

The leader of the Global Gene Transfer for Batten Disease project is Steven Gray, PhD.

To learn more about this exciting initiative, click here.

Mind over Body

Published: February 23, 2013 ~ 0

By Laura Edwards

When my alarm went off at 6:15 this morning, the outdoor temp hovered in the mid-30s, and a steady, cold rain sounded like a waterfall in my backyard. Of the 619 runners registered for the Charlotte 10 Miler and 4 Mile Run, 164 stayed home.

But I pulled on my wicking socks, UnderArmour tights, three layers of tech t-shirts – purple on top for Taylor – water-repellent jacket and wicking baseball cap.

I ate a Honey Stinger waffle and Gala apple and drank a glass of water.

I laced up my Brooks Glycerin 9s – shoes that served me well for 500+ miles in 2012 but that are balder than a tire on a junkyard car.

I posed for the requisite pre-race, pre-soaking photo.

I climbed in the car with my husband, drove three miles to the starting line and shivered in the rain for 20 minutes until the horn for the 10-mile race sounded. When it did, I discovered that in an effort to steal a few dry square inches beneath the starter’s tent, I’d found a puddle at least a couple of inches deep. Needless to say, my nice, warm, cushioned socks were soaked through.

I didn’t have time to worry about it, though – I had a race to run! I’m a bit of a perfectionist, so whenever I run a race, I want to set a new personal record (PR). My PR for any 10-miler is 1:25:27; my PR for the Charlotte 10 Miler, in only its second year of existence, is 1:26:10.

I’m a pretty consistent runner, which means that if I have any notion of setting a PR, I have no margin for error. I stuffed my iPhone in its double-Ziploc-bag fortress, stuffed that into my jacket pocket, pulled on my gloves, kicked up my water-logged, no-tread shoes and kicked it into high gear.

Two miles in, I entered one of south Charlotte’s greenways and met up with a friend who’d offered to run with me throughout a good portion of the race. Andrew competes in ultramarathons, so my rainy 10-mile race probably felt like a walk in the water park to him.

I usually run with an app that keeps me informed re: my distance and average pace, but today, I traded in my headphones for my running buddy. Andrew paced me, watched out for the wannabe lake-puddles on the greenway’s boardwalks and helped me stay motivated. He talked me through the killer hill on mile eight. I wanted to walk that hill last year, but I jogged it; this year, I RAN it. A few times, he coached me on when to pass people. In the last mile, he scoped out a runner who most likely fell into my age group; I smoked her.

Somewhere on the course, Andrew told me that running’s mostly a mind game.

I believe that.

When I heard that horn sound at the start line and saw the Boston Marathon jacket on the runner next to me – a runner probably in the 30-34 females group just like me – I thought about how I ran my first organized race of ANY distance barely five years ago, and how soccer chewed up my joints and spit them out, and how those joints probably belong in a trash can, not on a race course. I thought about the rain and the bald tires on my feet. And I figured I wouldn’t be setting a new PR. Not today.

But I did.

And out of the 179 runners – male or female – who actually braved the rain to run the 10-miler, I finished 27th.

I don’t know why my sister has to have Batten disease. I wish she could will her broken body to fight off the monster the way I can will my broken body to run long races, rain or shine.

But I do know this: we know how to dance in the rain. And after a good rain, the sun always comes out to play. There’s a monster called Batten disease in our midst, but good things are coming just the same. I can feel it.

I believe.

Water-Logged

Published: February 22, 2013 ~ 2

By Laura Edwards

At 7:30 tomorrow morning, my hometown should be drenched in a cold, steady rain. I’ll be on the south side of town with 619 other soaked nuts, running the Charlotte 10 Miler in Taylor’s honor for the second straight year.

Last year, we got a blue sky and just enough of a winter chill to cut through my long-sleeved tech shirt – good for some lung burn on the nasty hill at mile eight, but not too much to bear.

This year, I might have lakes in my shoes by mile two. So while the kicks I’ll call into service for this race cost more than some of my designer heels when I bought them, they’ve pounded more than 500 miles of asphalt roads, concrete sidewalks and pit gravel tracks; I’ll leave the shiny, new, broken-in-just-enough pair in my closet at home. I haven’t decided if I’ll expose my iPhone – keeper of my special music playlist – to the elements. And if that isn’t enough to throw me out of whack, I had a third surgery on my nose – I obliterated it playing soccer almost three years ago – last month and had to put a short hold on my training.

Needless to say, I don’t know if I’ll set a new PR tomorrow.

But this running thing, I’ve learned, is all about making adjustments; it’s about knowing how to perform even when the elements you can’t control – from the weather to your own body – deal you a wild card. A soccer player turned distance runner who didn’t enter a race till I turned 25, I made a living on the soccer field by being faster than everyone else. I set up shop on the sideline and went up and down, down and up, for 90 minutes, every game. While I miss soccer – I reached my limit for surgeries induced by the sport – I love how the sport of running can be a journey. I can stick my ear buds in my ears, lace up my shoes, run down my driveway with my house at my back and just wait for the path – and the world – to come to me.

Life is a little like that, too – and in a weird, roundabout way, so is our fight against Batten disease. I had no inkling of Batten disease until the moment my mom called me in tears on the morning of July 24, 2006 – the day of Taylor’s diagnosis. I was 24 years old that day; I was one month into my marriage and eight months into a new job; I’d recently bought a house; I was writing a novel. I had a very specific plan for my life, and I didn’t think anyone – or anything – could get in my way. But Batten disease forced me to make tough choices. It forced me to take a few detours. Batten disease was bigger – and more awful – than anything I’d ever faced.

We’ve all taken more than a few hits since that day in 2006, but we’ve won some big races, too. And the best part is, we’re still running – most of all Taylor. My favorite quote of all time is one by Cindy Smith, whose son, Brandon, passed away in 2009 after a courageous battle with infantile Batten disease. Cindy said that “Life is not waiting for the storm to pass. It’s learning to dance in the rain.” And just as Brandon taught his family to dance in the rain, Taylor has taught me to keep going on not only the best, but also the worst of days. So you’d better believe that I’ll keep running – on roads, sidewalks, tracks and in this fight for children like Brandon and Taylor – for as long as I’ve got legs for running and heart for fighting.

p.s if you’re half as crazy as me and live in the Charlotte area, come on out to the finish line of the Charlotte 10 Miler around 8:45 tomorrow morning. I’ll be the one in Taylor’s Tale purple and the water-logged, no-tread shoes.

Chapter One: Six Years Later

Published: February 9, 2013 ~ 12

By Laura Edwards

Today is the sixth anniversary of Chapter One – the night we told “Taylor’s Tale” to the world for the first time.

A lot has happened since my family and I shared our story with 160 people packed into a Charlotte living room:

One 501(c)3 non-profit organization
Two websites (one retired)
Facebook, Twitter and YouTube pages
Two blogs (one retired) and 358 blog posts
30+ events
10 grants for research
$411,154 contributed to the fight against Batten disease

We still don’t have an approved treatment for any form of Batten disease, though. And at home, we lose pieces of my little sister every day.

But I’m still writing.

You’re still reading.

We’re still fighting.

And here’s a little secret: Taylor’s Tale might just have saved its best for 2013 and beyond.

Taylor’s own fight becomes more difficult every day.

But the fight inspired by her courage and ignited by the 160 generous people who joined us for Chapter One has new life.

Stick with us a while longer.

We’re going to stick it to Batten disease.

Unexpected Angels

Published: February 5, 2013 ~ 0

By Laura Edwards

A few weeks ago, Taylor and my parents flew about 3,000 miles from our hometown of Charlotte, NC, to Portland, OR, the misty city guarded by towering evergreens where my sister had brain surgery in a hospital on a hill five years ago.

My sister isn’t the same chatty, bouncy girl whose golden locks we received in a Ziploc bag in the family waiting room moments after they wheeled her back for surgery on that cold, gray morning in January 2008. The cross-country trips to Oregon for follow-up care have grown more difficult with each passing year.

For this, their last scheduled visit of the five-year follow-up study, my family had a connecting flight in Phoenix, AZ. My parents had several large carry-on bags to manage in addition to my sister. They had just minutes to get to their connecting flight, scheduled to leave from a terminal on the opposite end of the airport. Mom later told me that as they struggled to make it with their bags and my sister, who can’t see or run, she couldn’t help but think that airports are difficult to navigate for people with disabilities and too much luggage.

Then, a man in a shirt and tie discovered their dilemma. Also from Charlotte, he was on his way to a business meeting. His flight left from a different terminal, but he carried several of my family’s bags and walked with them all the way to their gate. On the long journey, they learned that he has physical therapists and occupational therapists in the family and believes in people who help others overcome injuries and disabilities; but through all the frenzy, they never got his name. Mom told me that if he hadn’t helped them, they would have missed their connecting flight to Portland.

When my parents finally got on the plane and inched down the aisle towards their seats, they realized that they’d have to maneuver my sister over an elderly woman seated alone. A grandmotherly type, she had a “Pooh bear” shape, chocolate skin and silver hair, and the eyes behind her thick glasses looked kind. She told Mom that after selling Avon makeup for 32 years, she’d finally won a trip to Jamaica. She didn’t have a person in the world, but she’d been waiting for that trip, so she booked her flight and her room on Montego Bay. When she went to apply for her first-ever passport, she told the lady behind the counter, “I’m going to die before I can use this again, so when I come home, can I get a partial refund?” After she told her story, she got quiet for a while. But later, Mom glanced over and saw the woman holding Taylor’s hand in hers. She looked up, and her eyes met Mom’s, and she told Mom she’d pray for her daughter.

The woman on the plane wore her Avon name tag for her first trip to the Caribbean; Mom told me she can picture it, but for the life of her, she can’t remember her name.

Fighting a monster like Batten disease day in and day out makes it easy to get caught up in your own problems. It makes it easy to miss the accidental moments and the unexpected angels.

But at the end of the day, aren’t those life’s most beautiful things?

Aren’t they all any of us can really hope to have – whether or not we’re facing a terminal disease?