Real Magic

By Laura King Edwards

Five years ago, I spent five months learning to run without my vision, strapping on a blindfold a couple of nights a week and setting out into the dark world for two or five or nine miles with my friend and guide, Andrew Swistak. And on a chilly November morning, I crossed the finish line of a half marathon course ringed by soaring skyscrapers and cheering people and trees bursting with golden color I couldn’t see.

2013 blindfolded finish

The effort had started out partly as a publicity stunt to support Taylor’s Tale and partly as a unique way to honor my blind sister, who had run her first 5K race on the same course in 2008.  I didn’t realize that the experience – both the race itself and the training it required – would save my own life at a time when I’d nearly given up hope. Hope in the race to save my sister from Batten disease, and hope in my ability to be happy in any phase of my existence even as Taylor was dying.

Taylor's 5K finish

It was such a magical day that I was sure I couldn’t replicate it. So instead of setting a date for my next blindfolded half marathon, I set out to run a race – sighted – in all 50 states. And on the plane bound to Oregon, my first, the following August, I began writing a book.

I finished the manuscript in 10 months, but it took longer to convince a publisher of the audience for a story inspired by one child’s fight against an ultra-rare disease. That word – rare – can be the kiss of death, as so many rare disease advocates know too well. “That’s a really touching story, and Batten disease sure is sad,” says the would-be agent or publisher or donor. “But the world has so many other problems that need fixing.”

As luck or fate would have it, I did find a home for my manuscript, and after what had seemed, to me, a long and torturous journey to turn “Run to the Light” into a real book, my publisher chose the week of the 2018 Novant Health Charlotte Marathon to release it. The Charlotte Marathon, previously known as the Thunder Road Marathon, was where my sister and I had first crossed the finish line as blind runners. I knew that I had to try to recapture the magic of my 2013 race.

Meanwhile, Taylor continued to get sicker, and I wondered how much longer she’d live. When I wrote the epilogue of “Run to the Light” in January 2018, I admitted that I wasn’t sure she’d survive till the book’s publication. And throughout this year, every holiday we celebrated together became another mark on the calendar – a poignant reminder of how my sister bucked the odds.

Along the way, I faced a big life change of my own. The same week I wrote the epilogue, on an unusually snowy night in my pocket of the Carolinas, I learned I was pregnant with my first child. Still, I resolved to run 13.1 miles blindfolded for my sister in November, approximately six weeks after giving birth.

I wouldn’t have to do it alone. In addition to my friend, Andrew, who agreed to serve as my guide again, more than 100 people signed up to run or walk various race distances wearing purple for Taylor. Early on, I thought maybe we could field the biggest team at Charlotte’s biggest race event. I pulled a volunteer committee together to plan race week events and social media and PR strategies, hoping Taylor’s Tale could benefit from my sister’s amazing running story once again.

Then, the sky fell. Right after Labor Day, Taylor was admitted to the hospital with intractable seizures. For the next three weeks, she clung to life with the same spunk I’d seen since she was a fiery toddler who always figured out a way to win, even if her opponent had 40 inches and 100 pounds on her.

But Batten disease always comes out on top, in the end. Six days after my son Jack was born, Taylor took her last breath in an inpatient hospice unit, separated from the labor and delivery room where I’d brought a new life into the world by just a few floors.

My family, of course, could have canceled our marathon plans. We were exhausted and heartbroken, stripped bare before the trees lost their first leaves of fall.

But we didn’t. Instead, we did as Taylor would have done. And this past Saturday, Taylor’s Tale turned Charlotte purple for her. I ran the half marathon blindfolded, crossing the finish line in 2:01. I could credit training that started less than two weeks after Jack and I came home from the hospital, but I know better. No – something else willed my legs and lungs and heart to work like I hadn’t just given birth. Something else showed me the way to the end of a 13.1-mile course I couldn’t see.

Maybe it was my friend, Andrew, the perfect guide. Maybe it was the skills we’d honed in 2013, even more crucial considering we didn’t train together – at all – for this race. Maybe it was my friend, Alyson, my brother, Stephen (running his first half marathon), Steve Gray, whose gene therapy research Taylor’s Tale funded, or runners from Abeona Therapeutics, the company that licensed Steve’s work and will begin treating children like Taylor in an upcoming clinical trial. Together, this group formed sort of a bubble to protect me from falls in the stampede that took over Charlotte’s streets for a few fleeting hours on a picture-perfect fall morning.

untethered running

Maybe, above all else, it was the ghost of an angel – the same angel whose legacy outweighs any physical feat, blindfolded or not – that carried our team to the finish line on Saturday. When I took off the blindfold at the finish line, I hugged my guide and my mother and my newborn son, wrapped in a moment that felt matchless yet strangely familiar. And that’s when I knew:

This was magic.

finish line with Jack


BDSRA Conference Reflections: Writing a Better Story for Children With Batten Disease

By Nicole McEwen

In July, I had the amazing opportunity to go to the Batten Disease Support and Research Association (BDSRA) annual conference, attended by affected families, clinical experts, members of industry, researchers and others. Families come for support and to learn more about the fight against Batten disease and resources for their children. For many families, the conference also serves as their yearly vacation, as they are allowed to bring their children who have Batten disease, as well as their siblings. Experts come to teach, gather data and promote their work.

This year’s conference was a neat opportunity for Taylor’s Tale, as Vice President Laura King Edwards got to speak about her upcoming book and blindfolded half marathon, while she and President Sharon King also networked with key contacts to continue advancing Taylor’s Tale’s important work in research and rare disease advocacy.

So, what was my role in all this?

In addition to supporting Laura, Sharon and Taylor’s Tale, I primarily helped BDSRA with childcare, both for healthy siblings and affected children. I could never quite decide how I felt about the term “affected.” On one hand, it’s true: Batten disease has affected these children, chipping away at some of them so much that it’s difficult to see past their illness. But to me, this word also seems to diminish them, taking away from the fact that they are real people and, in most cases, still kids that have thoughts and feelings, even if they aren’t always expressed in the traditional way.

Regardless of labels, I loved working with those who have Batten disease. We had fun doing a variety of activities, and some of them were so creative that they taught me another way of looking at the world. They came up with new ways to play, or they showed bravery as they barreled through the cluttered room, even though they couldn’t quite see everything. And if they fell down, they got right back up and kept playing.

I connected with siblings, too. Siblings as young as 6 can come on these group outings to fun places. The thing I really liked about this program was that some of the older siblings were in charge of how it ran and where the kids went. I got put in charge of five 6-to-9-year-olds for a trip to the Nashville Zoo.

These were the best behaved 6-to-9-year-olds I have ever encountered. On the bus, we mostly talked about their siblings and why I was coming along. It was really neat for me, as a future Child Life Specialist, to hear what it was like to have a sibling with Batten disease. Since the disease is genetic, each of siblings had also gone through testing to see if they would eventually become affected. It was awesome to hear these kids be so vulnerable: how affectionate they are toward their siblings, but also how scared they were to be tested.

Some of these siblings and their parents were at the conference for the first time, and I couldn’t help but think back to the “affected kids” session, and how hard it must be for families to see their future in that room. Some newly diagnosed kids seemed normal, other than the fact that they had to hold toys right up to their face or ask what they were touching. Others were already using wheelchairs, couldn’t speak and ate through feeding tubes. I could only imagine what it would feel like to recognize that that is what is coming for my sibling or child.

During our time at the zoo, the siblings wanted to see every animal, and we ran through the exhibits to make it back in time for dinner. At the end of the day, the zoo closed down so that we could ride the rides without any lines. This was a fun and special experience for the siblings. My group did everything, even if they were scared, because they live with an example of how to conquer fear every day.

The affected kids had music therapy the following day, and that was something else! In a lot of ways, music can reach everyone, because whether you are moving and dancing to it, singing or just listening, it brings a smile or at least ease of familiarity. Music is everywhere, from commercials and elevators to the grocery store. People use music to get pumped up to run or excited to buy something or able to cry after a breakup.

The music therapist working with the group understood the power of music and left an instrument on everyone’s seat but also encouraged them to move or sing if they wanted. She took requests that ranged from Frozen and Moana to Happy by Pharrell. We sang popular new songs and old songs and danced around the whole room. One girl sang as if she was in an opera the whole time. And the best part? These children, and some adults, were allowed to just let loose and be however they needed to be in that moment.

The BDSRA conference always includes a banquet dinner on Saturday night. The affected children are escorted in by siblings or other volunteers as they are announced by an emcee.

I  wasn’t sure how I felt about this event and struggled with mixed emotions until I was in the middle of it. I had the honor of pushing the wheelchair of an older boy with Batten disease. I managed to get him in the room and lined up with the others on the dance floor before I really looked around. I had been fine when I was just in a room with the affected kids or out with the healthy siblings, but something about seeing these family members side by side, recognizing the love and the loss on each of the kids’ faces (not to mention those of their parents), will stay with me forever.

To my right, one of the older siblings had tears streaming down his face. His sister was probably in her 20s and in a wheelchair in front of him. In that moment, I recognized that he knew what was in store for her, and that there was nothing he could do about it. It took everything I had to hold back the rushing waves of water that wanted to explode down my face. I hurt for every single family in that room at that moment. It was the kind of pain that did not, and probably will not, go away.

The Sibling Dollar dance brought sweet relief after the kids went back to their families and everyone ate dinner. During this annual dance, people donate money to dance with the siblings. I didn’t have high expectations, as it felt like a lot of people in the room were families, but sure enough, most people brought up at least one dollar. In fact, the siblings raised more than $2,000 in the span of a few songs. Even better? Those from my outing group didn’t leave the dance floor. Instead, they kept dancing and smiling and encouraging their families to dance with them. They requested songs, and their parents recorded them. Some parents jumped in on the slow songs and swayed like it was the first time they had held each other in a long time.

There was such beauty and calm in those moments, and finally, I had to go back to my room and sit with my thoughts for a bit. Emotions like those I felt at the BDSRA conference are what will keep me employed on my journey as a Child Life Specialist. Sitting in my empty room after the dance on the final night, I understood my own greatest lesson from the conference: from the creativity and strength of the affected kids, to the energy and perseverance of their siblings, to my own pain of knowing what families will go through as they all stand together, I understand more clearly than ever that all kids and families touched by Batten disease deserve a better story, and we need to do something about it.


Newborn Screening Gets a Boost in North Carolina

By Nicole McEwen

On May 30, North Carolina leaders announced the expansion of the state’s newborn screening panel to include three rare diseases — Pompe disease, Mucopolysaccharidosis type 1 (MPS 1) and X-linked Adrenoleukodystropy (X-ALD). These same leaders are also committed to improving the process for adding conditions to the program in the future. Because of my role with Taylor’s Tale, I had an opportunity to attend the press conference in Raleigh. Here’s my take on the news as well as the importance of newborn screening programs.

Why is newborn screening important? 

Soon after birth, babies are screened for different diseases to ensure that, if needed, they receive early treatment and the best possible quality of life. This, in turn, saves families from much heartache and potentially a huge financial burden.

I graduated from the University of Georgia in May after spending my senior year as a Child Life Specialist intern at the Children’s Hospital of Georgia, where I worked with children and families in a hospital setting. This means I saw, firsthand, the difference this bill will make for babies born in North Carolina.

Imagine a family having to sacrifice their first child to a rare disease in order to understand what’s wrong so that their future children can be tested and treated for that same disease. It sounds awful, but it’s a painful reality: many parents have multiple children born with a particular rare disease, and they are forced to watch one (or sometimes more than one) son or daughter suffer while younger children receive treatment and live a longer, healthier life.

Imagine being a parent in that situation and knowing the medical community could have done something to help your child, if your child had only been screened for the disease early. To boot, the financial burden of your oldest child’s condition could become long and protracted if they need more advanced treatment as their condition declines and the damage becomes irreversible.

Imagine knowing that all of it could have been easily avoided and changed.

That’s where newborn screening comes into play.

With this move, fewer children and families in North Carolina will suffer from lack of early and appropriate treatment. Families will have more time to get to know each other, do meaningful activities together and watch their children grow, so they can make meaningful contributions to a society that allowed them to live.

Everyone stands to benefit here: the child, the family, our healthcare system and our society.

How did the press conference in North Carolina unfold?

We arrived at the state capitol and headed into a room inside the legislative building, where white coats packed into one side of the room and patients and families filled the other. The middle of the room was reserved for press. I stood with Sharon King, Taylor’s Tale president and Taylor’s mother, and Judy Mayer, a Taylor’s Tale board member, to watch the morning unfold.

Sharon King at press conference

Legislators spoke about newborn screening and their excitement for the addition of these three conditions. This is a happy day, they said — for children, for families and for the state of North Carolina. It doesn’t just affect our state, they said. It will set a new precedent for the way we treat newborns and hopefully create a ripple effect across other states. Another mother of a child with a rare disease also came to the podium to share her experience. While her child received treatment, this mother stressed that it would have been much better if it had happened even a few months earlier.

Despite the excitement around the news, it isn’t without detractors. For example, some members of the media questioned the cost of adding conditions to the newborn screening panel. Wouldn’t this raise the price tag of newborn screening for mothers? Wouldn’t additional screenings require more expensive equipment? What would taxpayers think? How many babies do some of these diseases really affect? What are the numbers? Is it worth it?

This is where I believe it’s important to focus on the big picture. After all, many rare diseases are chronic illnesses that cost a lot of money to treat over the long haul in addition to causing a great deal of pain and suffering for patients and families. Catching these diseases early, so that patients can receive meaningful treatment, is far less costly than dealing with the diseases later. Remember, too, that rare diseases as a whole are far from rare. In fact, in North Carolina alone there are approximately one million rare disease patients.

I look forward to watching this crucial work move forward and feel lucky to have witnessed such a big day. However, I know there we still have a lot to do in order to help the public comprehend and see the big picture. The press conference was a crash course in rare disease advocacy, and more than ever, I understand why we can’t ever give up the fight. I look forward to sharing more from my experiences this summer and hope you’ll join Taylor’s Tale, and me, for the ride.


Running the 2018 Charlotte Marathon for Taylor

By Laura King Edwards

In 2013, I put on a blindfold, summoned an ounce of my sister’s courage and ran the half marathon at Charlotte’s largest road race. When I crossed the finish line one hour and 59 minutes later, I knew I could never repeat the magic of that moment.

Mom and Laura at finish line

But I can conjure up a new kind of magic.

That’s why, on November 3, 2018, I’ll run the Novant Health Charlotte Half Marathon blindfolded one more time. I’m thrilled and humbled to get another shot at the experience that inspired my first book (hitting shelves the week of this year’s race) and 2017 TEDx talk.

I hope you’ll help me turn the city purple for Taylor, who completed her first 5K at this event 10 years ago — not long after losing her vision to Batten disease. Today is Global Running Day, making it the perfect time to begin working toward a personal goal (whether that be running your first half or full marathon, finishing your first 5K or simply getting involved in an incredible cause).

Join me at the 2018 Novant Health Charlotte Marathon and run or walk one of five distances:

  • Marathon
  • Half marathon
  • Marathon relay
  • 5K
  • Kids’ 1-mile run

 

IMPORTANT: Sign up at http://bit.ly/run4taylor. When you select your race distance, make sure your team name, ‘Taylor’s Tale,’ is selected.

If desired, you can up the ante by fundraising through your own run/walk or donating to support a friend’s effort. Donate Now

Why will you wear purple for Taylor? Share your own story with us in the coming months by using the hashtag #4taylor on social media. Give us a glimpse of your own training — the good, the bad and the ugly — or tell the world what running for Taylor means to you.

Whatever your speed — run, walk or cheer — I  hope you’ll join us for the race and other events that weekend (stay tuned for details). Happy running (or walking)!


How Taylor Inspired Me to Become a Child Life Specialist

By Nicole McEwen

I’m a recent graduate of the University of Georgia, and I’m excited to intern for Taylor’s Tale this summer. But why am I working for this incredible organization?

For starters, I’ve known Taylor’s incredible family for about five years (I know, I’m quite lucky!). We met through a Charlotte non-profit organization called Playing for Others (PFO). PFO encourages teens to ask themselves two questions: “Who am I, and how will I give of that?” As a member, I explored and developed my own leadership skills through the arts.

But the buddy program, where teens get paired with a person with a disability, was my favorite part of PFO. During my senior year of high school, I had the honor and pleasure of being paired with Taylor.

Throughout that year, I spent time with Taylor and her immediate family. I was amazed that each of them was so strong, driven and passionate. I had never met a group so willing to be courageous and so unwilling to take “no” for an answer. And, I knew I wanted to keep them in my life well after the buddy program ended.

When I was researching colleges, Mrs. King asked me what I wanted to study. I had always liked working with kids, and my three years in PFO showed me that I enjoyed working with people with disabilities as well. However, I didn’t like working with big groups of kids at the same time (ruling out teaching), and I didn’t want to be in charge of kids’ lives (ruling out careers in the medical profession). Mrs. King mentioned that their family worked closely with people called Child Life Specialists whenever Taylor was hospitalized. I had never heard of a Child Life Specialist, so I went home and pulled out my computer to put a Google on it.

Child Life has many parts, and the job changes by day and even depending on the specific floor where you work. But in general, Child Life Specialists (CLS) take care of the psychosocial needs of children and their families during a stressful time. They:

  • Create a sense of normalcy by providing familiar things to do to make the setting less stressful
  • Provide support during medical procedures
  • Guide therapeutic interventions to help children and families cope
  • Provide education in a developmentally appropriate way to help give patients and families control over their situation

 

Child Life? It seemed like everything I’d ever wanted. It would allow me to support children of all ability levels and their families in difficult situations and teach them about their disease or procedure. Most of all, it would allow me to play with kids and have fun doing it.

I chose the University of Georgia because they offer a program that sends four students to the Children’s Hospital of Georgia in Augusta during their senior year to intern as Child Life Specialists. The program gives these four students about three times the amount of clinical hours necessary for certification.

Luckily, I was accepted into the program and completed it this year, graduating in May. Along the way, I got to practice Child Life on six different hospital units. I saw and learned a lot about how hospitalization and different illnesses or diseases affect a child and their family system.

I also decided to apply for an online master’s degree in nonprofit management. I have always loved the non-profit mission and figured that if I ever get tired of hospital life, working in the non-profit setting would be a good way to continue working with my target population. Plus, some of the skills I’ll gain, such as management and grant writing, could help me in the Child Life world. I will start the online program through Northeastern University this fall.

In August, I will sit for my Child Life certification exam, after which I can begin working full-time as a Child Life Specialist. That means I’ll spend much of my summer studying.

But I wanted to do something meaningful with the rest of my time at home in Charlotte, and I’m so glad Taylor’s Tale invited me to become part of the team. This internship will be a great way for me to:

  • Give back to Taylor’s family for putting me on my life path that I love so much
  • Expand my nonprofit skills and knowledge before starting my master’s degree work
  • Continue to advocate for children and families, even if I’m not at their hospital bedside

 

The official start of summer is still weeks away, yet I’ve already jumped into many different pieces of Taylor’s Tale and the rare disease advocacy world. I look forward to being part of this amazing organization and population of humans. This may be my first post, but it certainly won’t be my last, and I hope you enjoy my perspective on the things I experience this summer.


Taylor’s Tale Engages Rare Disease Community in New Patient Information Portal

By Judy Mayer

As we support the development of treatments for Batten disease, Taylor’s Tale continues to advocate on behalf of the rare disease community. We believe that a cure for one is a cure for all.

So when the opportunity to engage the rare disease community in important work that will help patients around the globe presented itself, Taylor’s Tale didn’t hesitate to sign on.

Taylor’s Tale Co-Founder and Vice President Laura King Edwards shares her advice as a rare disease patient advocate during the North Carolina Rare Disease Patient Information Portal focus group held in Charlotte on May 15.

Taylor’s Tale Hosts Focus Group

The first tangible result of this commitment was sponsorship of a focus group with 13 rare disease patients and advocates on May 15.

The focus group, which included Taylor’s Tale President Sharon King and Vice President Laura King Edwards, addressed a major initiative called the North Carolina Rare Disease Patient Information Portal, a web-based, open-access portal.

The portal offers open and easy access to rare disease patients and their families and caregivers as they seek information and identify valuable resources. As a one-stop solution, the portal reduces the time-consuming need to monitor the avalanche of data shared across the internet and via clinical literature.

The portal also addresses the human need for people to connect as they engage in the constantly changing journey of rare disease treatment. The goal is to replace isolation with a supportive community of people who understand the challenges and needs of rare disease patients and their families.

The portal is a component of the North Carolina Rare Disease InfoHub, a major project led by a collaboration of the state’s universities to accelerate innovation in rare disease treatments and to improve care for rare disease patients. The InfoHub leverages the power of advanced computing and big data analytics to search, organize and present medical and treatment resources via its Patient Information Portal.

InfoHub Seeks Rare Disease Patients’ Feedback

The InfoHub’s Patient Information Portal is scheduled for its official launch in late 2018. During the development phase, the rare disease community is actively engaged to ensure the portal is easy to navigate and provides quality information that meets their needs.

Rare disease patients and their families and caregivers are encouraged to share how the site could be more responsive and useful. Visitors are encouraged to access the portal at https://rarediseases.oscar.ncsu.edu to leave comments in feedback boxes.

For more information about the Patient Information Portal focus groups, please email ncrarediseasecoalition@gmail.com.

Taylor’s Tale President Leads Focus on Patient Needs

The North Carolina Rare Disease Coalition is coordinating a series of Patient Information Portal focus groups across North Carolina. As chair of the Coalition and president of Taylor’s Tale, Sharon King assumed a leadership role in ensuring that the InfoHub project always keeps the patient front and center in its work.

Taylor’s Tale President Sharon King (center) listens during a North Carolina Patient Information Portal focus group in Charlotte.

“The patients are the real experts in their diseases,” King said. “They live with disorders every day that healthcare professionals may only see once in their careers. It is vitally important that the portal connects people and provides efficient access to resources that will provide answers to inquiries regarding the diagnosis, treatment and quality of life of rare disease patients.

“We are conducting focus groups in rural and urban areas and inviting people with a variety of backgrounds and diseases,” King said. “Rare diseases know no geographic, ethnic, racial, gender or income barriers. They are equal-opportunity destroyers of lives. As patient advocates in partnership with academia, industry and government, we are making real progress in providing real treatments for real people.”


Join Taylor’s Tale as a Force for Good on World Rare Disease Day

By Judy Mayer

Today is World Rare Disease Day. Unlike a typical holiday, the namesake of this occasion is anything but good or happy.

Yet as a Taylor’s Tale volunteer, I have learned that this day is a celebration of goodness and hope. It is a celebration of the millions of dedicated people who comprise the rare disease community….the healthcare providers, researchers, caregivers, families, and most importantly, the rare disease patients who bravely face each day with a steadfast commitment to see a better tomorrow.

United with our supporters and advocates, we are most definitely individual and collective forces for good.

What is World Rare Disease Day?

Founded by Eurordis in 2008 and brought to the United States by the National Organization for Rare Disorders the following year, Rare Disease Day unites patient organizations from around the world that work hard year-round to raise public awareness of and funding for rare diseases. It is a day of special events for very special people.

This day also provides a targeted opportunity to educate elected officials and other public policy makers, industry leaders, researchers and healthcare professionals about the dire impact that rare diseases have on the lives of patients and their families.

Rare Disease is a global public health imperative.

The numbers are overwhelming: worldwide, an estimated 350 million people live with a rare disease. In the United States, one in 10 people suffer from one of at least 7,000 rare diseases, some with devastating consequences.

The reality is clear: rare diseases are not so rare after all. Nor do rare diseases recognize geopolitical borders. Rare diseases represent an equal-opportunity destructive force that is shared by humanity.

Even small organizations like Taylor’s Tale are key to this global call-to-action. We participated in a consortium with other patient organizations in the United States and Ireland to raise funds in support of gene therapy research at the University of North Carolina. And, an international collaboration of scientists conducted the research.

Rare disease progress comes day by day.

While we may only recognize World Rare Disease Day once a year, progress continues on behalf of rare disease patients due to the hard work conducted every day by their advocates and caregivers.

Just a few weeks ago, Abeona Therapeutics announced that the Food and Drug Administration granted crucial Orphan Drug Designation to the gene therapy treatment for infantile Batten disease that Taylor’s Tale helped fund at the University of North Carolina. The Orphan Drug Designation helps accelerate the timeline for conducting human clinical trials while maintaining the standards that protect patients.

Taylor’s Tale founders Sharon King and Laura King Edwards were cited by the Batten Disease Support and Research Association (BDSRA) for their contributions in advancing this vital research.

Rare disease patients need our attention every day.

Like most special-designation days, World Rare Disease Day is intended to highlight our particular cause. The day serves to galvanize our community and, hopefully, to attract much-needed attention to the public health imperative of rare disease.

On this day, we will acknowledge our steps toward progress in providing viable treatments for rare diseases. We will re-commit to advocating for public policies that improve the quality of life for patients and their loved ones. And we will agree to keep fighting, because we must.

You can help this work by remembering that rare disease is not one day a year…it’s every day, every year for those whose lives are forever changed by a devastating diagnosis like Batten disease.

You can help us spread the word that attention must be paid, and that every life touched by a rare disease…regardless of where in the world…matters. You can join us to be a force for good for all rare disease patients.

Photo courtesy of Viriya Riyakum/Shutterstock.com


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,

Jane

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,

Steve

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.

Tara

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,

Ricki

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.

Polly

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.

Xoxo

Geary

Taylor,

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,

Jen

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.

Nicole

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.

Cheers,

Susan

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

T,

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!

Dawn

Taylor,

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.

Dad

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!

Love,

Mom

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