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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.

Luka next to his "Luka The Lion" scarf
Luka next to his “Luka The Lion” scarf.

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.

Julie Foudy holding the Luka the Lion scarf.
Julie Foudy holding the Luka the Lion scarf.

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.

Luka the Lion supporters
Luka the Lion supporters.

To donate to support kids with rare disease and their families, visit Luka The Lion Foundation Donations. For more stories on Luka and his movement, visit News & ObserverThe Mighty , and ABC11.

Follow this journey on the Luka The Lion Foundation website, on Twitter and Facebook.

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.