Text to Donate!

Published: February 1, 2013 ~ 0

By Laura Edwards

Today through Feb. 28, text “RARE” to 85944 to donate $10 to Taylor’s Tale and our fight against Batten disease!

We will receive donations through our partners at the EveryLife Foundation for Rare Diseases, who will match each donation up to a total of $1,000.

You can also donate online here.

If you’re unfamiliar with the EveryLife Foundation, it’s a great organization dedicated to accelerating biotech innovation for rare disease treatments by supporting science-driven public policy. Founder Emil Kakkis, MD, and his team believe we can do more with the scientific knowledge that exists today and bring life-saving treatments to the rare disease community. Currently, there are less than 400 approved treatments for 7,000 rare diseases affecting more than 30 million Americans. We share the EveryLife Foundation’s belief that by removing barriers in the drug development process, we could save more people with the science we already have. We partnered with the EveryLife Foundation in 2010.

The fine print: a one-time donation of $10 will be added to your mobile phone bill or deducted from your prepaid balance. This service is available on Verizon Wireless, AT&T, Sprint and T-Mobile.

Unnatural Order

Published: January 25, 2013 ~ 6

By Laura Edwards

People die every day.

Three weeks ago, I read a eulogy inspired by a post on this blog at a memorial service for my grandmother, an angel in life who learned to fly on Christmas Day.

My grandmother’s cousin and close friend attended the service at the church that afternoon. Yesterday morning, her husband lost his battle with an aggressive brain tumor – the same kind of tumor that afflicts a main character in the novel I promised my grandmother I would finish one day.

When the azaleas bloomed in Charlotte last year, my husband and brother-in-law drove their father to New York to bury his mother – their last surviving grandparent.

My grandmother and I had a special relationship, and I will never stop missing her. But she was 41 years old when I came into this world. Though I never wanted her to get sick or pictured her that way until it actually happened, part of me always expected to outlive her.

Cancer is a horrible disease that can happen to anyone. But my grandmother’s cousin’s husband was not a young man.

My husband’s grandmother had five sons and many grandchildren. She lived for 92 long years on this earth.

My little sister, Taylor, is 14.

Five-year-old Taylor seemed perfect – beautiful, intelligent, spunky. Healthy. The world was hers to conquer.

Six-year-old Taylor had some unexpected trouble with first grade math.

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

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

Fourteen-year-old Taylor lives in a world that is always dark. She can’t learn like other kids. She has seizures. She loves to sing, but she can no longer talk except for a few words. Soon, she will be in a wheelchair.

Batten disease steals the lives of children.

Disney World

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.

People often ask us why we bother with Taylor’s Tale – the non-profit organization we founded not long after Taylor’s diagnosis. They Googled Batten disease, or they know something about it from their relationship with us, and they wonder why we don’t just enjoy the time we have with her.

I do catch myself fighting too hard sometimes – I’ll realize that I’ve spent more time on my laptop than with the people I love in a given week – and when that happens, I know it’s time to pull back.

But we HAVE to fight. We know we can’t win every battle. We look at the fourteen-year-old Taylor and know that we likely won’t even win our own. But we hate Batten disease so much for what it’s done to my sister that we simply can’t sit back and let it win EVERYTHING. We know there are other children and families fighting their own battles and that there will be more in the future for as long as we don’t have a treatment.

We know Batten disease won’t quit.

If Taylor had a choice, she wouldn’t quit.

Neither will we.

What’s in a Picture?

Published: January 20, 2013 ~ 5

By Laura Edwards

My little sister, Taylor, is blind. But her eyes – the color of a Milky Way candy bar and framed by long, feathery lashes – used to work just fine. Taylor, whose sassy but sweet disposition once helped her get the best of people twice her size, could tell you exactly what she wanted without saying a word – just by tilting her head and fixing those eyes on you (sometimes she’d cross her tiny arms across her chest for good measure).

I miss the sassy side of my sister, who these days is 100 percent sweet even though she has every right to be spitting mad at the world. I miss getting “the look.”

I’ll never forget the moment we first noticed something amiss with Taylor’s vision. We used to visit the North Carolina State Fair in Raleigh every October. One of the vendors served hush puppies (deep-fried cornmeal dumplings – a Southern favorite) in an old, dimly lit mill house at the fair. As we left the dark mill house licking our fingers in 2005, someone noticed that Taylor couldn’t find the stairs.

And so it began.

It took several years for Batten disease to steal all of the cells in my little sister’s eyes. First, she lost her night vision. Then, she lost her central vision. I still remember how, before Taylor went blind, she tilted her head in the direction of voices and other sounds so that she could see them out of the corner of one eye.

A few years after that day at the fair, we went out for ice cream following a day on the beach. As we walked by a shop that sells Christmas decorations year-round, Taylor made a remark about the Christmas lights in the shop window.

We exchanged anxious glances. My heart leaped into my throat.

Not long after that day, though, Taylor’s lights went out for good.

Eyes are powerful, expressive communication tools. But Taylor lost hers and so much more to Batten disease. My sister hasn’t made eye contact with me in five years. I miss looking into those Milky Way eyes and knowing they’re looking back into mine.

Now all I have to remind me of those moments is pictures. Lots and lots of pictures.

Even in Death

Published: January 8, 2013 ~ 0

By Laura Edwards

When Taylor was diagnosed with Batten disease in 2006, we almost succumbed to the pain. We almost didn’t fight.

I will never forget how my Grandma Kathryn – who loved her grandchildren more than her own life – urged us to face the demon; how she helped us find the strength to believe.

In 2008, Grandma Kathryn was diagnosed with Lewy body dementia, another neurodegenerative disorder.

An angel in life, she earned her wings on Christmas Day, 2012.

This week, members of my mom’s book club sent gifts to Taylor’s Tale in my grandmother’s memory – a complete surprise to us all.

Many others have also given to our cause in Grandma Kathryn’s memory since her passing two weeks ago.

There was nothing my grandmother wanted more than for there to be an answer for Batten disease – the monster that dared to steal her grandchild from her. And nothing would have made her happier than to know that people gave to the fight in her memory.

Even in death, she still manages to take care of her family.

That’s my Grandma Kathryn.

I’ll always love you. And I’ll never, ever stop fighting for Taylor. Because that’s what you would have done.

Make a Gift to Taylor’s Tale

My Life’s Resolution

Published: December 31, 2012 ~ 0

By Laura Edwards

I considered making a New Year’s resolution.

But then I decided that too many New Year’s resolutions are short-lived; and I want mine to make it past February.

So this is my Life’s Resolution.

Beginning in 2013, I vow to be a better big sister.

If you follow my blog regularly or know Taylor’s Tale and our efforts to fight Batten disease, you may think I’m crazy.

But the truth is, even though Batten disease isn’t finished stealing my sister, I’ve already let it steal our sisterhood. I’ve traded hayrides and ice cream cones and trips to the park and snuggle sessions on the couch for endless hours on my laptop fighting a monster I can see, but can’t touch. We still do those things, but we don’t do them as often as we used to. And I don’t try hard enough to get through to a little girl who can’t communicate as easily as she could when she was 8 or even 4. I need to try harder.

I will never, ever stop fighting Batten disease. But Taylor has never stopped being a great sister to me. And my Life’s Resolution is to start being a great sister to her.

Twelve Reasons to Believe: Love

Published: December 25, 2012 ~ 0

By Laura Edwards

The following is 12th in a 12-post series.

I’ve experienced love that withstands the most difficult battles; love that transcends time; love that survives this life and the next. I’ve been touched by real-life angels.

Life on this earth has many wonderful things, but love is the principle reason for living.

Love gives me reason to believe.

Merry Christmas, and best wishes for a New Year filled with great moments and belief in a bright future.

Twelve Reasons to Believe: Every Moment is a Gift

Published: December 24, 2012 ~ 2

By Laura Edwards

The following is 11th in a 12-post series.

Last night, Mom, Taylor and I made our annual trip to uptown Charlotte’s Blumenthal Performing Arts Center for the Nutcracker Ballet.

The Nutcracker has always been Taylor’s favorite part of the Christmas season. It has been a while since the lights went dark for her, but she still remembers the sights of the ballet from before she lost her vision. When the Arabian dancers came onto the stage during the second act, she cried out, “The snake!” The people around us likely wondered what in the heck my little sister was talking about (or why she was talking at all), but Mom and I knew Taylor remembered that several years ago, the female dancer used a prop snake in her dance. And T may be blind now, but she never forgets.

It has been a somber Christmas season for my family, as my beloved grandmother is in her last days in this world (before she got sick, our Nutcracker trio was a quartet). But weeks ago, Mom and I resolved to keep our tradition despite the difficult days both behind and ahead of us.

Only God knows how many more times the three of us will be able to attend together. But for now, we have moments like this.

Moments that give me reason to believe.

Twelve Reasons to Believe: Our Donors

Published: December 23, 2012 ~ 0

By Laura Edwards

The following is 10th in a 12-post series.

Increasing awareness of Batten disease and advocating for the rare disease community are crucial to our mission to save children like Taylor, but let’s be honest – fundraising is really important, too. It costs money to do the kind of work that could one day (very soon!) lead to a life-saving treatment, and people who suffer from ultra-rare diseases depend on organizations like Taylor’s Tale to fund the foundational work that will get a biotechnology company like Genzyme or Biomarin interested in taking the treatment to market.

That’s why we can tell inspiring stories for the rest of our days, but without the generosity of the individuals who’ve given close to $400,000 to Taylor’s Tale since 2007 (including about $12,000 just in the past few weeks in response to a holiday letter from my mom, our current president), we never would have been able to fund the development of the enzyme that kids like Taylor lack at the University of Texas Southwestern as well as other important work. We would not be on the verge of beginning an exciting new project.

To make a tax-deductible gift to Taylor’s Tale in support of our fight against Batten disease, visit our website. For your convenience, you can make a secure payment online via PayPal; if you prefer, you can also send a check by mail. A link to a printable donation form is provided. Give Now

If you’ve already made a gift – whether recently or at any time since our founding nearly six years ago – thank you.

You give me reason to believe.

Twelve Reasons to Believe: Taylor’s Secret Fan Club

Published: December 22, 2012 ~ 4

By Laura Edwards

The following is ninth in a 12-post series.

Because my little sister has a non-profit organization named for her, she’s more famous than most girls her age. A lot of people – from close friends and family to perfect strangers all over the world – send well wishes and bear hugs her way. She’s the star of a website and social media sites and this blog. She’s been featured in newspapers and magazines and television news stories.

She even has a secret fan club.

In 2006 – the same year we learned Taylor has Batten disease – Mom served on the board of the Council for Children’s Rights; she got to know the organization’s development assistant, a young woman about my age, and sponsored her for the Junior League of Charlotte.

Taylor breezed her way into this young woman’s heart. The two became fast friends, meeting for ice cream cones and puppy walks (the young woman helped Taylor get a Bichon Frise – a cottony ball of energy and love named Sunny to complement her own easygoing Bichon, Mason).

Soon, packages began to arrive in my parents’ mailbox. Addressed to Taylor, the envelopes identified the sender simply as “Taylor’s Secret Fan Club.” They contained silly glasses and mixed CDs and art supplies; “girly girl” stuff from Michael’s or the $1 section at Target.

About a year later, this young woman gained acceptance to law school at Northwestern University in Chicago. Taylor was happy for her friend but sad that she wouldn’t get to see her every week. She understood her friend’s decision, though, because she believes everyone should follow their dreams.

Not too long after Taylor said goodbye to her friend, she received another package from her secret fan club. It had a Chicago return address.

Taylor’s Secret Fan Club moved its headquarters a few more times over the next couple of years, but its president has never forgotten my little sister. And regardless of what the future holds, I’ll never forget the love she squeezed into all of those packages or the love she showered on Taylor – her special friend.

She gives me reason to believe.