Jasper’s Legacy

By Laura King Edwards

Early this morning, I learned of the death of Jasper Duinstra in the Netherlands. When I saw the news on Facebook, my eyes misted and my legs went numb and my heart caught in my throat. But I’m supposed to be strong, so I wiped my eyes and shook out my legs and swallowed the knot, and I stood up at my desk and walked to a meeting.

Jasper’s family is Dutch but briefly lived in the U.S., where they formed fast friendships with other families fighting Batten disease. Jasper’s parents, Bou and Pip, believed in approaching the challenges of Batten disease in the same spirit as their young son’s approach to life – a spirit of enthusiasm and commitment. They established a fund, Jasper Against Batten, to support potentially lifesaving research. continue reading →

Ten Years of Pain

By Laura King Edwards

I’ll never forget my first Batten disease conference.

I was 25 that summer, still young and naive and supremely confident. My sister, not quite 9, had some of her vision and legs that worked and a smile that could light up a room. She could talk and sing and she didn’t have seizures. We’d known about her illness for almost a year, but I just couldn’t picture her getting as sick as the kids whose photos I’d seen on the Batten association site.  continue reading →

The Cost of Suffering

By Laura Edwards

Today is my sister’s 17th birthday. She can’t eat her favorite ice cream cake anymore, but my mother ordered a pink and purple ice cream cake anyway. Batten disease does its best to steal everything, but we grin and bear it and do our best to have normal experiences, because that’s what Taylor would do.

Unfortunately, Taylor is spending her 17th birthday in the hospital. After a rough night, she ended up being taken to the hospital by medic late this morning. The doctors can’t figure out exactly what’s wrong. But it’s likely a recent forced change to one of her medications is the main culprit. continue reading →

Counting Batten Disease in Years

By Laura Edwards

When I was a kid, Christmas and birthdays and the first day of summer felt different from other days.

But July 24 is just a day. It’s different for me only because it counts the years; it marks the passage of time.

It’s been nine years since the first time July 24 – the day of my sister’s infantile Batten disease diagnosis –  mattered to me. A lot has happened since then; I remember how scared I was in the beginning, when I thought we had a chance to save Taylor’s life. Now I have to live with the knowledge that I’ll lose my sister regardless of what I do. continue reading →

#CureBatten Forever

By Laura Edwards

Celebrities like Mark Wahlberg, Jennifer Garner and Megan Fox are rallying to save the lives of two young girls diagnosed with a rare form of Batten disease. The girls, Charlotte and Gwenyth Gray, are the daughters of Hollywood producer Gordon Gray. Gray is known for movies like “The Rookie,” “Miracle” and “Million Dollar Arm.”

Now he’s trying to raise $10 million to save his kids. continue reading →

Charlotte and Gwenyth Gray: Awareness, but at What Cost?

By Laura Edwards

By Sharon King

A question mark popped up in my inbox this morning. The message came from a friend wondering why neither Taylor’s Tale or a member of Taylor’s family had responded to the recent release of a website and video from the family of Charlotte and Gwenyth Gray, two young sisters recently diagnosed with CLN6, a form of Batten disease. The story flooded my Facebook feed yesterday. continue reading →

Christmas After Batten Disease

By Laura Edwards

christmas morning

Family has always been important to me, and my family has always made a big deal out of Christmas.

Though my brother and I are grown and my sister is 16, I know that on Christmas morning, we won’t be allowed downstairs until my parents are ready and my dad has his camera phone locked and loaded. Santa Claus doesn’t wrap the gifts he leaves at my parents’ house, and when Stephen and I were little, Dad thought we’d try to sneak into the family room before dawn to peek at the goods. To foil our plans, he set booby traps, like paper Scotch-taped to the doorjambs and verbose notes from Santa’s elves warning us of the measures in place, from retinal scans and tripwires to claymores and drones. He always signed the notes with a smiley face and “Merry Christmas.” After Dad led our human train into the family room at an agonizingly slow pace and we dove into our respective piles of gifts, we dug into Mom’s homemade monkey bread and egg and sausage casserole and ate till we couldn’t eat anymore. It’s been years since I wrote a letter to Santa Claus, but Dad still sets traps and writes notes and leads the train every Christmas morning.

I still remember the first year Stephen and I had to help Taylor find her way to the family room. She’d lost her vision to Batten disease and was unsteady on the stairs in her nightgown and fuzzy socks. In time she’d develop such a keen sixth sense that she could fly up and down those stairs despite the blindness. But in those days my sister was still afraid of the dark. We all hoped and believed she’d find a way to beat Batten disease. Lying in bed at night I even imagined she’d see the light again one day.

So much has changed since my sister’s diagnosis in 2006. When someone you love is fighting a chronic illness with no treatment or cure, you fall into a habit of marking time by holidays and life events and how much things change from one to the next. I remember how difficult it was watching Taylor search for the stairs that first Christmas After Batten Disease. But now I’d give anything to have one day with my sister as she was then – still able to pull surprises out of her stocking and sing along to her favorite Christmas carols and eat Mom’s monkey bread at the dining room table. All normal things we take for granted. All things Batten disease has robbed from her.

I can’t go back in time, and I can’t cure my sister. But Christmas Day will still come, as it always has. And if loss has taught me anything, it’s taught me that life is about living in the moment and recognizing the good that you still have.

Fighting a Chronic, Terminal Disease

By Laura Edwards

horseback ridingAn article reprinted from the Washington Post was on the front page of a newspaper lying on the kitchen island at my office this morning. I never read the papers in the kitchen (and I’m in PR), but the headline caught my eye.

“Living with a husband’s chronic illness has a bad effect on his wife’s health,” it said. I set down my water, picked up the paper and scanned the article. My eyes immediately landed on a quote about halfway down the article.

“Terminal illness has an end date. Chronic illness is enduring.”

Yes, that’s true, I thought. But what if the illness you’re fighting is both?

I’ve written a blog and most of the print and electronic communications for Taylor’s Tale since our founding more than seven years ago, not long after my little sister’s diagnosis. Mom never wanted me to use the word “terminal” when writing about Batten disease; she preferred that I say “life-threatening.” She said “terminal” felt cold; sterile; hopeless. She’s right. But right now, that’s how a Batten disease diagnosis feels. That’s how it feels in my chest when I see what it’s done to my sister in eight years.

The life we live afterward doesn’t have to be. Though I’m realistic about my sister’s situation, I believe in what we’re doing even more than I did from day one because of what I’ve learned. And if I had it to do all over again, I’d fight just as hard for Taylor’s life even knowing what I know now. Because I know that someday, soon, “terminal” won’t be an appropriate label for this godforsaken disease.


By Laura Edwards

We started tonight around the table at my parents’ house. Dad picked up takeout from our favorite Italian restaurant. Mom made a fresh salad and baked brownies. But for the faraway look in my sister’s eyes, we could have been any other family sharing a meal on a weekday.

But we never made it to dessert.

Batten disease steals everything, especially the things you love. My sister loves music and her family. Our presence tonight and soft music playing on speakers in my parents’ kitchen proved to be too much for her system to handle.

That’s why, before we ever made it to Mom’s brownies, we found ourselves huddled around Taylor on the floor as she suffered a series of seizures. As I watched Mom and my husband and brother cradle my sister and attempt to calm her down, I recalled a long-ago day that we all held each other on the floor of my parents’ bedroom upstairs, struggling to understand the news we’d just received.

Our lives would never be the same.