Embracing the Art of Living

By Sharon King

It has been one of those weeks — a week of busyness, stress and grief. Some (okay, a lot) of it was self-imposed, yet I let it cloud my focus on the precious things that I should have been doing.

So, here I am on this cool and gray weekend morning reading — really reading — the messages and love notes friends sent to Taylor in celebration of Valentine’s Day. As I read their many thoughts and memories, I’m overwhelmed with the love, kindness and appreciation for my sweet girl. Each letter touches my heart in a special way.

There is a beautiful and frame-worthy drawing from Taylor’s cousin, Morgan. The drawing is bursting with Taylor’s preferred purple and pink.

Cousin Madi described Taylor using each letter of her name: Terrific, Appreciated, Youthful, Lovely, Optimistic and Resilient. Right on, Madi — I agree! Taylor has a lot to share about the value and power of optimism. I wish more people could know her and benefit from this important lesson. Talk about changing the world. And resilience? I’m immediately reminded of visitors to our home after Taylor lost her vision. Taylor would dash around and run up and down the stairs without her white cane. I always got a quizzical look that said, “I thought she was blind.”

Our friend, Linda Talmadge, has long served as Taylor’s “Director of Mischief,” and her leadership skills have not gone unnoticed. In her three-page letter, Linda shared memories of catching a five-pound bass on a hot summer afternoon in the Ormond family pond. I’m not sure we expected to catch anything, but we did, and we ate it.

big fish

Linda also assumed the role of assistant to Taylor’s physical therapist and occupational therapist when needed. When Taylor struggled with aquatic therapy, Linda showed up wearing her bathing suit, jumped into the water and sang the Carolina fight song as she helped Taylor walk in the pool.

There were the afternoons when Linda and Taylor danced around the house to “Go You Chicken Fat, Go.” (You’ll only understand if you were a child in the 1960s.) There were trips to peach orchards (it’s therapy when you reach overhead and pluck the peaches from the branches) and strawberry fields, where we picked buckets of berries. Those orchard trips always happened in the name of therapy, but the fruit was certainly a bonus. We made bread (stirring is therapy!) and Rice Krispie treats, because again, it’s good therapy. Eating all of the treats also served as emotional therapy. And as for all of those sunny afternoons filled with singing to Linda’s harmonica accompaniment…’nuf said.

I wish that I could single out each and every card and note Taylor received in this post. When I read the message from our longtime family friend, Polly, I smiled thinking of Taylor dancing on Polly’s hearth.

Thanks also to the folks at Abeona Therapeutics for the many cards and messages of care and encouragement. Abeona is named for the Roman Goddess who protects children. Thank you for being a testament to your namesake.

I’ll end with Linda’s closing thoughts to Taylor:

Taylor, I could write forever for I have had a front row seat watching you grow up. You showed me the joy there is in celebrating the moment and having fun just for the sake of savoring the day. There is freedom in not worrying what others think, or what tomorrow may bring or what society may view as important. There is love in holding hands, being together and sharing secrets. There is peace in simply embracing the art of living.

I knew freedom, joy and love before my friendship with you began. You taught me that they can come at unexpected times from unexpected places. Perhaps that is life’s greatest lesson.

Respectfully submitted,

VP of Mischief

Linda Love Talmadge

Linda and Taylor

Love Notes to Taylor for Valentine’s Day

By Laura King Edwards

I get paid to tell stories, yet I’ve always struggled to find the right words to tell my sister what she means to me. It became even more difficult after she lost her ability to talk, turning our verbal communication into a one-way affair. But for Valentine’s Day this year, I wanted to do something special to show Taylor how much I love her.

Which got me thinking: given the chance, what would other people say to my sister on a day set aside to celebrate love and affection? People whose lives Taylor has touched, or whose actions and words have touched hers?

That’s why, on a cold day in January, I sent a simple email request to friends and family, asking them to send “love notes” to Taylor. How has she changed their lives? What are some of their happiest memories of her? If they could say one thing to my sister, what would it be?

I hoped and prayed I’d get at least a few responses – enough for a short blog post or a few photos on social media.

I should have known better. In fact, I had to create a separate folder in my inbox for all of the typed responses I received, and when I returned home after a week in Arizona, I’d received so many written letters, they almost didn’t fit in the box.

Now, what started as a small, simple idea has become one of my favorite projects since we founded Taylor’s Tale more than 10 years ago. My sister’s valentines are scattered across my desk and the floor of my home office. Their heartfelt words echo in my mind when I lie in bed at night. They are a physical rendering of real love for my sister and our family. A reminder of how that love is changing the trajectory for children and families who have and will receive the devastating diagnosis of Batten disease.

I hope you enjoy reading Taylor’s love notes as much as I did.

Dearest Taylor,

I will always remember the special day — where I was, the time of day, the circumstances, and the weather — when I learned your mom was expecting you. Your mom was president of the Junior League of Charlotte, and the two of us were finishing up a meeting at our home away from home, the League building, when she said that she had some news.

I followed your mom to her League office and walked through the door. We were about to get on a chartered bus and go on a tour of Charlotte. I can still see her now, standing behind her desk, and then she bent down to get something out of a drawer. Then she stood up and said, “I’m going to have a baby!”

I was so surprised, and it took about two seconds for surprise to turn into utter joy. I fell in love with you right then and there while you were nestled, safe and sound, a little miracle God was sending our way.

You were eagerly anticipated and completed the King family. No child could be more loved, adored and treasured.

I talked with your mom right after you were born and saw you for the first time soon after. This memory I share is one that I will hold in my heart forever. Your life has touched my life in innumerable ways, and I love you and am grateful for you and for your family.

With love,


Dear Taylor,

I wish I could have known you as you were. I wish I could have known you as you should have been. I mourn for what might have been, but I celebrate the future that you have inspired. You’ve had a greater impact on me than you could imagine. Enough to change the lives of many children that you and I have never met. One day in the future, you and I will talk, and we’ll look at all the kids that you’ve helped. We’ll look at the movement that you inspired. I’ll tell you the little piece that I know of “Taylor’s Tale,” the amazing story that it is.

With love always,


Dear Taylor,

Where do I start?  You, dear Taylor, have changed my life. I have often questioned some of the decisions I have made in my life, but you are the reason I no longer do that.

You, dear Taylor, have made me realize my purpose in life, and that is to fight for those patients and caregivers living with rare disease. You are the reason I met your amazing mother, who is my hero. She is relentless in fighting for all of those living with rare diseases, and she is making a difference in so many people’s lives because of you, dear Taylor.

Dear Taylor, you are such a brave, beautiful soul. You are a fighter, a warrior who is living a life to help so many people. You are a trailblazer to lead us all down a path that can improve the quality of life of so many people. If not for you, dear Taylor, I would have never had the pleasure to meet your wonderful mother, who is like a sister to me.

You have been so instrumental in a campaign to change the world and make it a better place for those living with rare disease, and we are all so grateful for the gift of light you shine on us each day.

Happy Valentine’s Day, Taylor, with much love and admiration.


Dear Brave, Beautiful Taylor. I so admire you for being so strong and inspiring throughout your journey. During my recent illness, breast cancer, I thought of you often, and how you are always smiling.

Lots of hugs,


Dear Taylor,

Through the years we have shared some fun times together. Before you were born, I spent a lot of time with your grandmother — in fact, I considered her one of my best friends and one of the nicest people I have ever known. She was always telling me stories about you when you were a baby — then later, when you learned to walk and talk – and still later, when you liked to sing and dance. We both had grandchildren, so one of our favorite things to do was to talk about what our grandchildren were doing.

One night when you were visiting her in Raleigh, your grandmother and your family wanted to go out for a few minutes, so Cecil and I said you could stay with us. Cecil and you got back to our house before I did, and when I drove into my drive, I could hear music blaring out to the driveway. I wondered what was going on and who was playing that music. When I walked into the living room I saw that it was you — you knew all the words to High School Musical and had decided to put on a show for Cecil and me. You used the hearth on the fireplace for your stage and the hall outside the living room for your offstage area.

You were beginning to lose your eyesight just a little, and I was so worried that you might fall, but no — you just hopped up on the hearth and sang your songs, took a bow, jumped down and ran to the hall. Then came act two, when you rushed back onstage and sang more songs from the movie. You knew all the words to the songs from High School Musical and sang them beautifully. You were still performing when your mom came to pick you up. What a happy evening that was for Cecil and me!

I also have beautiful memories of the first playathons when you came to hear the students play for you — one after another. You would sit all afternoon just listening to the piano solos. We tried to give you some refreshments, but even as young as you were, you seemed to prefer to listen to the music than eat cookies. I always think of you when I listen to music, because I saw what joy music brought to you.

I did not know your mom as a young girl but got to know her through Halloween parties and sharing trips to see A Christmas Carol before you were born. I did know your brother and sister a little when they were young. But through the years, I have gotten to know your whole family through you, and that is a wonderful gift you have given me. You have given so many gifts to so many people — your life has brought people together and taught us how to love — your smile lights up the room and makes others smile — the way you strive to do your best makes others want to do their best — and when you do not complain, it makes us ashamed of when we complain — and your love of music inspires us all to stop and listen and enjoy.

Taylor – you are a gift to us all.


Dear Taylor,

You don’t know me well…but when I found out you could still enjoy your sense of smell, it made me pay more attention to the things I’ve planted in my garden. I have tried to bring them for you to enjoy as well as your family. I’m not sure how I helped you…but you have changed how I look at things…through the eyes of one who can’t.




I remember watching you and your PFO buddy, Nicole, during the visual art event we had at Creative Campus. The connection between the two of you is so beautiful, and to watch you both creating art together filled my heart. Then, it was such a gift to be able to honor Taylor’s Tale and create a stunning dance piece. Thank you for inspiring everyone around you…you are so loved. 🙂

Big hugs,


I remember getting the page that told me about Taylor and said the words, “Batten disease.” I had no idea what that meant, so I went home and looked it up.

Frankly, what I saw scared me. I didn’t know how to get close to someone who potentially couldn’t walk or talk or plan into her adulthood. All of the things that I was thinking about with college on the horizon were things I knew this girl I was going to meet would miss out on. So how was I supposed to relate to her?

But this is no sad story. I met Taylor at the first Playing for Others buddy event, and my fears could not have been more shattered. Taylor was probably the most expressive child, or I should say teen, at the event. We made art and music and explored Discovery Place throughout the year; at each place, she smiled and laughed and took on every activity with her whole heart. At each place, she also taught me a new lesson. The first thing Taylor taught me: you don’t have to see to know what’s going on or appreciate your surroundings. And by this, I mean not just physically view what’s going on, but that life is more about the feelings. The feelings you get when you do something you love, or when someone is kind to you. The feeling of being in a room full of people letting loose and having fun! The feeling of being reunited with someone you haven’t been around in awhile. All of these things aren’t great because of the sight, but because of the overwhelming emotions that accompany them and make those moments joyful.

On top of this, Taylor taught me no challenge is too large. Some days are hard, and some days are easier, but each day is a blessing, and it is important to do what you can each day.

The last really big thing that Taylor taught me, amongst many small life lessons, is that keeping your head up and your heart open makes a world of difference. Even with what most of the world views as limits, Taylor is more open than anyone I know. Project openness and kindness, and that’s what you’ll receive in return. I can’t even begin to write everything Taylor has meant to me, but she sure did change my perception of reality.

Taylor — I just want to thank you for challenging me every day to see the world through better eyes and take each day by storm. You will always have a special place in my heart.


It has been a long time since we have seen Taylor and your family in Portland. I appreciate Taylor and your family for showing me that the love between family members can move mountains. My small experiences with Taylor are a reminder to those of us in healthcare to keep patient and family needs at the center of the care we provide. Keep reaching for answers, keep asking for support, keep challenging us to do more, think harder and bigger, be better.

Best to you — a hug to Taylor and your parents — I think of you all often.



Dear Taylor,

Where do I seriously begin? I am SO truly honored that I was given the opportunity to be your teacher for six years!

I will never forget that day I first met you. You walked in with the prettiest blonde hair and spunkiest little personality. You talked my ear off as if you knew me your whole life. At that time you were only in third grade, and little did I know that I would have the chance to teach you for six years!

When I was given the news that you had Batten disease and that I was going to be your teacher, I was determined to keep your little brain going! We were going to fight a hard fight with this ugly disease!

People told me you would never learn braille and to not even try to teach you, but I knew you could do it! We became a team! You were determined, and so was I. You worked so hard at braille, both reading and writing it. I was so amazed that a little girl who had lost her vision so fast was able to learn a new way of reading and writing. What I love about you, Taylor, is you did it with pride and surprised everyone around you. You never gave up, said it was too hard or complained. I admire you for that. If we all could have the determination you have, this world would be a better place.

One of my favorite memories of you is when we played Braille Twister. We would laugh so hard twisting our bodies, falling all over the place while reading braille at the same time. At the end of the day, we would have a party for working so hard. You wore high-heeled glitter shoes and danced and sang to your favorite music. There wasn’t a song you did know! You reminded me so much of myself when I was your age, singing and dancing like no one was watching! It would put a smile on my face every time I was with you.

We spent a lot of time together T, and not all of it was happy. We cried together and talked about things that would break my heart. I saw with my very own eyes how Batten was robbing you of your childhood. It was so unfair. No little girl should ever go through what I witnessed. Gosh I miss you! I miss talking to you and hugging you.

I feel so privileged that you came in my life and taught me so much. You made me a better person and teacher. You are an angel on Earth that has changed so many lives. Thank you for changing mine.

I love you always,

Ms. Jill — your vision teacher


You stole my heart and blessed me with your beautiful soul. I am in awe of your tenacity to fight and prove that the “typical” doesn’t apply to you! You’ve been such an inspiration to me, and I think of you daily. I will forever be grateful for the time I was blessed to share with you and your wonderful family. Love you girl!



You have meant so much to my life, and every single moment with you is a blessing. One of my favorite memories of our many days and weeks in Portland was taking the streetcar to Pioneer Mall, where we would make our way to the fountain to make wishes and toss pennies. After a required stop at the candy shop for jelly beans, it was on to Starbucks for Scrabble and decaf lattes.

You have taught me many lessons of life: you have turned fear to courage, despair to joy, trepidation to anticipation, you inspire words to become actions, and mountains to move, and…you turn darkness to light, and then the path is seen.

Taylor, I love you more than life itself! Happy Valentine’s Day, my precious Taylor.


Dear Taylor,

You came into my life as a surprise, but I know now that you were meant to be. At 40, I still had a lot to learn about life, love and priorities, and you were a good teacher. I was always so busy when Laura and Stephen were little. Your sassy little self made sure to remind me what’s important in life.

When I learned my third child would be another daughter, I told your grandmother that I certainly hoped you would be a girly girl. (Your lovely sister was such a sports-loving tomboy!) Grandma Kathryn simply said, “Be careful of what you wish for.” Your love of fashion and ability to accessorize — legendary! How many trips did we make to Claire’s for jewelry and hair bows (always followed by decaf lattes at Starbucks!)?

Your siblings never hosted birthday parties for the dog, but you did…multiple times. Cookouts with cake, streamers and party hats. And canine guests.

I wouldn’t trade the hours we sat cuddled in a chair watching The Little Mermaid for anything. You knew every word to every song. In fact, you loved to sing and dance so much, I was convinced you would someday be a star on Broadway.

Yes, Taylor — you have been an unexpected blessing and, indeed, a bright star helping to change the world in more ways than you know. You have changed my world — you changed me. The key to happiness has new meaning because of you.

You are so loved, Miss T. Happy Valentine’s Day, Sweet Girl!



It’s not too late to send a valentine to Taylor. Share your love note with us via email now, and I’ll make sure she receives it! Send a Love Note

The Bell Still Rings for Me

By Sharon King

Sweet Taylor…always a lover of fairy tales, princesses and Christmas.

While her mom wasn’t prepared for holiday decorations at the mall the day after Halloween, Taylor delighted in the magic of it all. It was NEVER too early for her.

When Batten disease claimed her vision, I worried that Taylor would be robbed of her Christmas joy, so I simmered oranges and spices on the stove to help her smell the Christmas she couldn’t see. Even though The Nutcracker was a family tradition, I struggled with buying tickets each year as the disease became more and more apparent. It’s a ballet…you have to be able to see it, right?

Looking back, I realize that Taylor never allowed Batten disease to steal the beauty or the meaning of the season. It wasn’t a problem for her, as it was for her mother. I think she held the lights and sparkle in her mind’s eye. As for The Nutcracker…even today, she wears a most lovely smile when the music begins. When I tell the Christmas story, she holds the wooden manger a friend made for her, and I believe she remembers.

“At one time most of my friends could hear the bell, but as years passed, it fell silent for all of them. Even Sarah found one Christmas that she could no longer hear its sweet sound. Though I’ve grown old, the bell still rings for me as it does for all who truly believe.” ~Chris Van Allsburg, The Polar Express

Oh, the things I’ve learned from Taylor about appreciating that which is most important, turning negative into positive, and believing in miracles and dreams come true. Ten years ago, I was told that any treatment for Taylor’s disease was so far off, it could not come in her lifetime and maybe not even in mine.

That dream of dreams should come true in 2018 with the start of a clinical trial. Children like Taylor will be given the gift of hope — hope made possible in part by the many people who support Taylor’s Tale.

Yet, while we are making real progress for so many children and their families, important work remains. Specifically, we seek to fund the development of the first Standard of Care plan for infantile Batten disease. This plan will address quality of life issues and help doctors and care teams manage infantile Batten disease. It remains crucial even as treatments become viable.

Batten disease has stolen much from Taylor and her family, but the sweet sounds of Christmas still ring clear and strong for us, as it does for all those who truly believe. Thank you for joining us in believing that a better life for children like Taylor will always be a gift worth fighting for.

Wishing you peace, hope and dreams come true in this holiday season and the New Year,

Give the Gift of Hope

6 Ways to Turn Tragedy into Opportunity

By Laura King Edwards

My mother never really liked the word ‘hope.’ “Hope feels empty,” she said one day early in my sister’s fight against Batten disease. “Hope is waiting for someone else to make your life better.”

Instead, we built our mantra on the word ‘believe’ — which sounds a lot like ‘hope’ but really isn’t the same thing at all. And for 10 years, our belief drove us in our relentless effort to beat the rare brain disease killing Taylor. Viewed one way, it worked: we championed many research initiatives, including a novel gene therapy approach that sick kids could receive in a clinical trial starting in 2018. We could quit now knowing we achieved our original goal — produce a potentially lifesaving treatment for infantile Batten disease.

But there is a next chapter to Taylor’s Tale. That’s the message we shared at an event this month celebrating our 10th anniversary and the friends and donors who support our work. And that night, as I listened to our keynote speaker, Dr. David Fajgenbaum, I thought about the role hope will play in the coming days and months and years.

David knows a little something about hope. Once a star athlete known to his friends as the Beast, he was diagnosed with a deadly illness called Castleman disease during medical school in 2010. He’s alive today because of his single-minded mission to take on his own disease.

Despite Mom’s initial disdain for the word, hope is crucial in the fight to save people like David and my sister, Taylor. Hope is necessary to overcome any kind of struggle, no matter the severity or scale.

But hope alone is not enough.

If you really want to turn tragedy into opportunity, do these six things:

  1. Have hope. Hopelessness sounds the death knell for any battle, no matter the circumstances. If you don’t have hope, you won’t succeed. It’s that simple.
  2. When hope is not enough, turn hope into action. When the stakes are high and the road leads uphill, hope isn’t enough. Hope is easy. Acting on hope takes more effort. You can wait for something good to happen. You might even get lucky — the first time. But the good won’t last. If you want to create real, tangible, measurable change, you have to act on that hope. You have to do something.
  3. Be willing to make sacrifices. If you want to win the toughest battles, you have to be willing to make sacrifices — whether those sacrifices take the shape of time, money, or other interests or goals. You won’t create the kind of change you want to see on 50 percent effort.
  4. Play through overtime. In his keynote address, David talked about the multiple relapses of his disease since 2010. Each time, he came close to death, even receiving his last rites. But each time, he bounced back. David came to see his life after these relapses as overtime periods, which only fueled his passion to find a treatment for Castleman disease. And, he argues, we’re all in overtime, because tomorrow is never a guarantee. Approach every day like you’re playing through overtime, because every day is a gift.
  5. Stay positive. This is something I’ve personally struggled to do in the 10 years since my sister’s Batten disease diagnosis. It’s hard to have a positive outlook when it feels like the world is crashing down all around you. But I’ve realized life is a lot more pleasant when I focus on the aspects of my life that are good. And that gives me the strength to fight all the stuff that’s bad.
  6. Believe in possible. Doctors didn’t think David would survive Castleman disease. And people questioned the likelihood that a tiny, all-volunteer team could tackle Batten disease — a monster that eluded science and medicine for more than 100 years. Norwegian explorer, scientist and politician Fridtjof Nansen once said, “The difficult is what takes a little time; the impossible is what takes a little longer.” Today David is in his fifth overtime —at 45.45 months, his longest remission since 2010. And Taylor’s Tale needed 10 years to accomplish what most saw as a stretch goal that bordered on impossibility.

It didn’t take long for Mom to warm up to hope. Today, she likes to say that hope comes in different boxes — different shapes and sizes, but always a gift. And while the change Taylor’s Tale helped create came too late for Taylor, the hope is real. Real treatments for real people, coming to life at a rapid pace. And yet, our work is far from done.

In the coming days and weeks, we’ll share more details about a central theme of our next chapter — the development of a care management plan to address the needs of patients suffering from infantile Batten disease right now. This plan will provide a lifeline for desperately ill children and their families. I’m excited to bring more big and worthy ideas to reality, and I hope you’ll join us for the ride.