In February 2014 Wynter was diagnosed with ALL, by the time it was diagnosed and they began treatment, the cancer was so severe that she needed to be LifeFlighted. A couple days later, her cancer had become so significant in her spinal column, that it began to form chloromas, which cut off the blood flow to her legs, causing a spinal stroke and leaving her permanently paralyzed. She remains wheelchair bound to this day. Her chemo was not as successful as other kids in treatment and she was not where she was expected to be. Her chances for survival got lower and lower. Her best option for the greatest long term results was a bone marrow transplant. She and I put our lives on hold for months and traveled to Boston. The treatment she received there was nothing short of life saving and miraculous. Wynter is now nearly 4 years in remission, and despite the life long deficits that cancer has caused her, she is happy, healthy, and living a life filled with joy.
Mark, Kylie's dad tells us that "Kylie lived a life that radiated joy. From her earliest days her family called her Smiley Kylie because a smile was never far from her face. She grew to love being on stage and at the age of twelve, Kylie's knee began hurting while she was performing in a school play. She was soon diagnosed with Ewing's sarcoma, a rare bone cancer. Even when faced with harsh cancer treatment, Kylie fought with her trademark smile and chose joy in spite of her circumstances. After a 10-month struggle, Kylie's battered body succumbed to the disease. She left us with a lasting legacy of hope and a mission to cure childhood cancer. Smiley for Kylie was created in her memory to fund childhood cancer research and help others choose joy during difficult times.
As for a quote, when she was in treatment, there was a social media challenge called, #WeAreHere. They asked the question, "why are you here." Kylie's response was very telling. I suggested that she was here to encourage others, to help them get through their hard time. Or maybe she was here to be the voice of children with cancer so that we could break through the funding gap. And then, I had it....
"You're here to show people that you can still smile, even when life stinks."
I remember her reaction as if it were yesterday. Kylie was instantly repulsed by my suggestion, but not at all in the way I expected. She was so quick to point out:
"Daddy, life doesn't stink. It's just not fair sometimes."
So, she wrote: "I am here to help people smile, even when life's not fair.""
This is easier said than done, but Kylie lived up to her reason to the fullest. To inspire others when you are well is one thing, but to continue to inspire and spread positivity while fighting your own battle is another - Kylie fought a great battle and her story and memory still inspires and lives on today. Thank you, Mark, for sharing Kylie's story, we will continue to smile and choose joy, even when life isn't fair, in her honor.
Learn more about Smiley for Kylie at www.facebook.com/smileyforkylie
Pixie-Rose is a 2 year old twin who has been diagnosed with Myelofibrosis and Myelodysp
From the day Brandon was born he overcame challenges. He entered this world at 24 weeks weighing only 1 pound and 10 ounces. He was the only surviving triplet born at 24 weeks. His parents, Chris and Sherri call him their “miracle and hero”. Brandon remains strong, caring, smart and funny even while facing the challenges of cerebral palsy, autism and visual impairment. Now at the age of 19 Brandon faces an additional challenge. He has been diagnosed with MDS with a chromosome 7q deletion. He will be undergoing a stem cell transplant in June to overcome MDS and the chromosome 7q deletion for good. Please follow Brandon’s story on Facebook “Brandon – our hero.”
Emily now 9 years old had a bone marrow transplant in 2016. She was diagnosed with MDS, Monosomy 7 and Refractory Anemia with excess blasts. Statistics say only 4 in 1 million children are diagnosed with MDS a year. MDS is most commonly seen in older adult men. The only known cure for Emily’s condition is a bone marrow transplant. The family was blessed to have a matching sibling donor. Today Emily is doing well.