How a Scarf Came to Symbolize the International Movement for My Son's Rare Disease

Our son’s rare disease doesn’t have a ribbon, a 5K benefit race or even a name. That’s why while traveling the world cheering for a kid born with a rare disease, the #LukaTheLion scarf embodies the support galvanized from a passionate network of family, friends and medical providers affectionately referred to as “The Pride.” The scarf has not only traveled the world, but it means the world to us as a symbol of support that we’re never alone.

It all started with a baby named Luka born with a rare disease, the love of a supporting team, three brothers with unique talents, a design made in a Parisian cafe, a guy in Turkey named Serfug and Ruffneck Scarves. Now it’s an international movement — a #LukaTheLion #ScarfChallenge that raises awareness for pediatric rare diseases through the Luka The Lion Foundation, a 501(c)(3) nonprofit organization founded to support kids with rare disease and their families so nobody ever feels alone.

Luka Fisher was born on March 4, 2014, with a rare primary immunodeficiency disease that is thought by experts to be unique to him. Not only was his disease unique; but so was he, as Luka personified the characteristics of a lion with wisdom beyond his years. He was beautiful with adorable big, brown eyes, curls and a crooked smile. He was brave, enduring 10 hospitalizations, 11 surgeries, chemo, a bone marrow transplant, and endless injections, infusions and scans, often uttering, “I did it!” at the end of a procedure. He was strong, despite his disease and injections that doctors said caused extensive bone pain. Yet he still rolled over, crawled, stood up and walked not only developmentally on time, but ahead of his peers. He was resilient, always showing glimpses of his soul even in the toughest of times when his organs were failing him. In his last conscious hours, he waved goodbye to his family, pointed to his heart and said, “lion.”

Luka truly was, and still is, a lion — that’s how he got his own hashtag, “#LukaTheLion.” Even though he passed away from complications to a bone marrow transplant on December 1, 2015, Luka taught the world to always remember to roar, no matter what. And — thanks to Ruffneck Scarves, the unique #LukaTheLion scarf and The Pride, Luka continues to roar.

The unique #LukaTheLion scarf came about as a story of true brotherly love between Luka’s father, Zach, and two uncles, Seth and Isaac. Scarves are the symbol fans use to show support for their team, often standing proudly with a scarf overhead. Before, during, or after the game, regardless of the result or outcome, the fans stand proudly with their scarf showing support for their team. Naturally, the soccer-loving family saw an opportunity to rally behind Luka like supporters for their beloved team.

Zach is a massive sports fan who has scarves representing teams including Arsenal, Paris Saint-Germain, U.S. and Poland’s national teams, and more hanging in Luka’s room and throughout the house. When asked by his brother Seth what he could do to help support Luka and the family during this arduous medical journey, Zach had the idea to make a #LukaTheLion scarf. Since Luka had such a unique condition, there wasn’t a color ribbon or other symbol to show that his family and friends supported him. So, naturally, Zach and Seth found a creative way to combine all of their passions for Luka — how he embodied the lion, soccer and scarves in a way that transcended boundaries and the physical distance between Seth’s home in Paris, France and Luka’s home and hospital in Durham and Chapel Hill, N.C., respectively.

After reaching out to Ruffneck Scarves and being asked to design something unique for Luka, his Uncle Seth and Aunt Audrey (or “Dey Dey”) sketched out the #LukaTheLion scarf designs on a napkin over hot chocolate at a Parisian cafe. They were honored to capture the spirit of Luka’s budding support network of family and friends through a unique scarf design incorporating the lion image from a T-shirt made in Luka’s honor during his bone marrow transplant. Once designed collaboratively as a family over messenger while collectively watching the Arsenal match from their homes in Paris and Durham, Uncle Seth produced these unique scarves to send to family and friends so they could show support and cheer on Team #LukaTheLion. The dream of a unique scarf to honor Luka had become a reality thanks to Ruffneck Scarves and some brotherly creativity.

Yet, the scarves may not have taken off as the international #ScarfChallenge movement if it wasn’t for the audacious nature of Isaac, the middle brother of Zach and Seth, and Luka’s uncle. While on production with ESPN, Uncle Isaac shared the #LukaTheLion scarf on a whim with Super Julie Foudy, a decorated U.S. soccer legend. He asked if she could take a picture with the scarf explaining, “The kid’s in a tough spot,” and Julie willingly held up the scarf, smiled, and took a photo. Just like many firsts she’s lead, Julie became the inaugural #LukaTheLion #ScarfChallenge champion supporter. Isaac knew that Luka’s father Zach and I grew up admiring Julie Foudy and the entire 1999 World Cup Champion U.S. Women’s Soccer Team. He thought a photo of a soccer sensation with the scarf would bring smiles to their faces during a tough time, helping them not feel alone. And it certainly did.

The rest is history. After University of North Carolina Coach Roy Williams and Carolina Panthers football team tight end Greg Olsen joined the #ScarfChallenge, hundreds of people — family, friends, co-workers, and medical providers asked for a #LukaTheLion scarf so that they, too, could take a picture and share it to show their support for #LukaTheLion.

What made this #LukaTheLion #ScarfChallenge gesture so meaningful was that it was during Luka’s most challenging hospitalization during the fall of 2015. Before then, even though Luka was very sick, most of the time he was happy and playful. Sadly, during what was his last hospitalization, Luka was fighting for his life. That’s why this challenge took on a new meaning. It became a way for people to show they cared and were thinking of Luka and his family during this very difficult time. That even though there wasn’t much tangibly they could do to help, they could still hold up his unique scarf and be his fan, showing his family they are on Team #LukaTheLion. The scarf, always with Luka and family in the hospital room, became a window to the rest of the world and the enduring support of Luka’s fans, or The Pride, helping him to never feel alone.

The #LukaTheLion scarf has traveled millions of miles both physically and emotionally. It’s been to countless marathons and races, UNC, Duke, and other children’s hospitals,  ABC11 bone marrow drives, sports stadiums with ESPN sports journalists and spiritual shrines. It has also traveled around the world including Paris, Japan, the Durham YMCA, Finland, South Africa, Chicago, Saxapahaw, Florida, Springfield, Ill. and the White House. The scarves were even a part of Luka’s celebration of life funeral service where I encouraged everyone to continue the #ScarfChallenge and keep Luka’s memory alive. The scarves are still with Luka and his older brother, Maks, at their shared gravesite.

The scarves even came full circle, as our family received a letter of sympathy from Serfug in Istanbul, Turkey. Serfug, who oversees the facility that manufactures the scarves, expressed in a letter his honor at being a part of Luka’s story to bring support to a kid who needed it the most.

Just as the #LukaTheLion scarf now goes all the places Luka couldn’t go in person due to his rare disease, the scarves have also come to represent the unique way you can show support not only for Luka, but for all kids with rare diseases through the Luka The Lion Foundation. A symbol of support, the scarves are now the cornerstone of what the Luka The Lion Foundation stands for: supporting kids with rare disease and their families so nobody ever feels alone.

Show the world you are The Pride. Raise your #LukaTheLion scarf and share with the hashtag #ScarfChallenge to support kids with rare diseases. And always remember to roar.

Click here for the whole story on The Mighty. 

How 'I Just Kept Running and Running' for a Cause and You Can Too

By Julia Fisher 

"Never in my life have I ever ran the equivalent of a half-marathon in the course of three days. Never did it previously occur to me that running could be enjoyable. Never did I feel the motivation or spirit to simply run for fun. But I guess that’s what happens when you stop thinking about what you can’t or don’t want to do and instead focus on simply moving forward — as far as you can in that moment —  with the ability to turn around.

I can’t lie, there is an incentive. I signed up for Charity Miles, an App that tracks your distance for running, walking and biking and connects you to a sponsor who donates to a charity of your choice for every mile you complete. Most of the charities are international nonprofits with multi-million dollar budgets, but with amazing missions and causes, including The Leukemia & Lymphoma Society. I started team #LukaTheLion and “I just kept running and running,” as Forrest Gump said. I even have a white YMCA visor I wear, and I think people may start to recognize me around town as “that lady” ala Forrest’s red hat. (Hopefully, I won’t grow a beard that long.)

While the Luka The Lion Foundation — our small and brand new 501(c)(3) nonprofit to honor Luka’s spirit and raise awareness for pediatric rare diseases and support patients and their families so they never feel alone —  doesn’t get any proceeds from my current streak of running through Charity Miles, we could. Just by starting a team and getting others to join and run — it helps with our application process to possibly, maybe be a charity that benefits from the app. And while that opportunity would be incredible, it’s really not even about that anymore. It’s that running to directly benefit a cause motivates me to get out and challenge myself to go as far as I can, and then simply turn around and go back.

It’s a parallel to the journey we were on with our son Luka who was born with a primary immunodeficiency disease so rare that it doesn’t even have a name and is thought by experts to be unique to him. He survived to make it to a bone marrow transplant at 15 months old, and then after many complications and much bravery, his body just couldn’t take it anymore and he couldn’t go forward anymore. Every time I stop and turn around in a run, I stop and take a moment to deeply connect with Luka and all the kids with rare diseases and their families who feel like, or can’t — turn around and keep moving."

Click here for the whole story on The Mighty. 

The Gift From My Son's Nurse That Came During My Greatest Time of Need

By Julia Fisher

"Standing in the lobby of the church, I was speechless. My mouth was wide open in awe. I never imagined when I unwrapped the gift what I saw would consume all of my heart, giving me comfort in the greatest time of need.

A square frame held the majestic beauty of the perfectly mixed yellow, orange and brown watercolors, forming a fierce, strong, brave and beautiful lion. Through this beauty, the painting instantly brought alive the spirit and soul of my beloved son, Luka, just as we prepared to celebrate his life during the church service.

The painting — of a regal lion with one eye covered staring deeply into the soul of the viewer — was a gift that changed our lives. The painting symbolized so much more than what the eye can see, for it’s worth more than a thousand words, especially when you consider the “no coincidences” situation that helped create the masterpiece."

Click here for the whole story on The Mighty. 

Why I'm a Bandwagon Carolina Panthers Fan (Yes, I'm One for Good Reason)

By Julia Fisher

"I’ll proudly admit, I’m a bandwagon Carolina Panthers fan. But I think we’d all agree I have good reason to be pulling for the Panthers and tight end Greg Olsen.

He’s not just a Pro Bowl, Super Bowl-bound professional football player. He’s not just a nominee for the Walter Payton NFL Man of the Year Award. He’s not just a loving father. He’s not just the parent of a child born with a rare heart defect who has navigated the health care system treatment after treatment. He’s not just the founder of a nonprofit organization, Receptions For Research (R4R): The Greg Olsen Foundation, that provides resources to enhance the lives of those affected by cancer and cardiovascular diseases or disorders.

Greg Olsen is also someone who understands something as simple as holding up a scarf in support of another child and family facing medical crisis can make a world of a difference, if even for just a moment. That this show of support can bring a smile, warm the heart, and help make you feel like you are not alone, but on a team."

Click here for the whole story on The Mighty. 

To the Anonymous Donor Who Saved Our Son by Giving a Piece of Herself

by julia Fisher

"Thank you for undergoing the procedure to donate your bone marrow and stem cells through a long needle going into your pelvic bone that may have included anesthesia, so you hopefully didn’t feel any pain. Thank you for enduring the week-long or more of recovery. Thank you for the time you committed going through this process with an estimated 24-30 hours over four to six weeks.

Thank you for your gift of life to a perfect stranger who happens to be our child. Your stem cells from your bone marrow gave our son an immune system that he wasn’t born with completely. By giving a piece of yourself — you gave us the world. 

There are not enough words to say thank you.

With love,

A grateful family"

Click here for the whole story on The Mighty. 

To the Parents of a Child Waiting for a Diagnosis

by julia Fisher

"Never in my wildest dreams did I realize it could take so long to have a specific medical diagnosis. Or that a diagnosis may never be clear. Or that the “gray area” of science would lead to the possibility that the diagnosis is “unique to your child.” Or that the diagnosis doesn’t even have a name yet.

We can’t be the only ones. We know there are countless other children and parents across the medical spectrum waiting for a clear diagnosis just like us.

Just like a diagnosis, every person and family has their own story. We’ve learned more than we ever imagined we would through the past 20 months and counting. Our journey taught us these 11 things while we wait for a clear diagnosis for our child:

1. Treat the symptoms. This is the best advice we ever received from a doctor. Although our child doesn’t have an overall diagnosis, he has a unique set of symptoms, some of which could be treated. Some of the treatments were a result of trial and error and couldn’t be easily explained — but worked. So, we treated the symptoms despite waiting for a diagnosis that still eludes us completely."

Click here to read all of the 11 things we've learned waiting on The Mighty.

When a Nurse in My Son's Hospital Room Said, "I Can't Imagine That Life"

by Julia Fisher

"We took a trip to the clinic from our “hospital home” recently for our lion to have a procedure. We were in the clinic for about two hours total, and it was surreal to be there since we’d been away for a few weeks. In that time, people have gotten married, resigned or moved. Patients who were new this summer are now knee-deep into chemo with long braids being traded for short, soft strands. Moms of teenagers tell stories about how their daughters don’t like them being there on scan days because it makes them anxious. Toddlers want more snacks.

And what I witnessed as I sat there was — life. “That life.” Even when our child is facing a serious disease, we can still make the most of it because we’re living it.

We are living “that life” each and every moment no matter where we are and no matter what obstacles are in our way."

Click here for the whole story on The Mighty.

Why This Simple Question About My Kids Is Anything But for Me

by julia fisher

“How many kids do you have?”

It’s a simple question, right? But I don’t know how to answer it. And I’ve felt that way for over five years.

When I’m in a grocery store or some kind of temporary space and it’s coming from a kind stranger, I usually answer with a forced smile and say hesitantly, “A boy and a girl.” What I’m doing is navigating the question by not exactly answering the question.

But when I’m in a hospital or medical setting — which unfortunately is often — the answer gets even trickier. It’s hard for me not to tell the truth to a medical professional, even if it’s just small talk. But that question isn’t small to me.

I think the biggest reason I can’t not tell the truth at the hospital is that these are the only walls that all three of our children have experienced. And, oddly enough — as I write this — it’s the first moment that thought has really clicked."

Click here for the whole story on The Mighty. 

How I Trusted My Instincts Raising My Child with a Rare Disease

By Julia Fisher

“You’re not going to like hearing this, but babies at 6 weeks are just fussy.”

That’s what an infectious diseases doctor told me when our baby was hospitalized for the second time. He just had a spinal tap in the Emergency Room that revealed signs of meningitis, yet there was no bacterial growth. He was scheduled for surgery to get a central line placed so that he could have access to IV antibiotics since his fragile little veins could not take any more IV pokes.

In that moment, I felt everything at once. I was stunned. I was frozen. I was scared. I was angry.

When the doctor said this to me, he was leaning in front of my face, examining my baby as I held him close to my chest. Not only was this doctor in my physical space, but he was dangerously close to my mental and emotional space. After what felt like a lifetime, I finally responded as calmly as humanly possible, “As his mother, I have to disagree with you — something is very wrong.”

Click here for the whole story on The Mighty.