St. Louis Blues superfan has victory over rare blood disorder
St. Louis Blues superfan has victory over rare blood disorder
Original published date: 6/28/2022
A fighting spirit
Laila has been a St. Louis Blues fan since she can remember. She has countless memories of cheering her favorite hockey players as they conquered the ice. She had no idea that she would have to become tougher and fight harder than the athletes she idolized.
At 9 years old, Laila suddenly became very ill. Doctors were puzzled and she spent 14 months in and out of the hospital. After countless procedures, spinal taps, MRIs and a brain biopsy, Laila was diagnosed with hemophagocytic lymphohistiocytosis (HLH)—a rare and potentially fatal immune deficiency disorder. A blood stem cell transplant using cells from a matching donor was her best chance for a cure.
Inspired to do good
Kenton first learned about blood stem cell donation and the NMDP RegistrySM in his high school history class. His teacher’s personal story of donation inspired Kenton to join the registry as a potential donor when he turned 18.
To his surprise, Kenton was called a few months later and told he was a match for a young girl who he would later find out was Laila.
At the time of his donation, Kenton was studying biology at the University of Kansas. His dreams of becoming a doctor were fueled by his own family history of dealing with health struggles. He grew up watching his dad struggle with common variable immunodeficiency disorder. “That really impacted me to do my best to try to make a change in other people’s lives, so that they didn’t have to go through what my dad and my family had to go through,” said Kenton. “It was one of the best days of my life.”
It was one of the best days of my life.”
Kenton
Blood stem cell donor
Life-changing moments
Finally, the day came that changed Laila’s life. In January 2019, Laila received the blood stem cells from her then anonymous donor. Kenton’s selfless act would help Laila get back to being the high-spirited, superfan who captured the hearts of the St. Louis community and beyond. Because there are rules to protect the privacy of both the patient and the donor, it would be months before Kenton knew who received his donation. During that time the pair exchanged anonymous letters.
“At the end of the letter that Laila had written me, she wrote, ‘You’re my best friend, whether you like it or not,” said Kenton
The two met during the NMDPSM Gala. It was an emotional and touching moment as they embraced in a hug on stage. As tears flowed down both of their faces, everyone in the room knew this was the beginning of a life-long friendship.
To this day, Laila supports NMDP through fundraising, rallying her community and educating others about blood stem cell donation. “Spreading awareness and raising money helps my heart heal,” said Laila.
In a single year she raised $10,610—enough to provide more than five patient assistance grants to families facing financial barriers related to blood stem cell transplant. “NMDP ultimately saved my life. Everyone should be given that same opportunity for a second chance,” said Laila. She hopes her story helps inspire others to give.
Spreading awareness and raising money helps heal my heart.”
Laila
Transplant recipient
It’s time to enter your saving lives era. Whether through fundraising, volunteering, joining the registry or a financial contribution, you can make an impact for patients and families like Laila.