Meet the St. Baldrick's Foundation 2020 Ambassadors

Kids and their families give an in-depth look into the world of childhood cancer and why research is so important

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Jan 07, 2020, 09:00 ET

LOS ANGELES, Jan. 7, 2020 /PRNewswire/ -- Seeing the world through the eyes of a child is often filled with wonder and imagination. It should not include things like hospital beds, needles and chemotherapy. Sadly, these things are a reality for kids with cancer. To raise awareness about childhood cancers and the need to fund research to find cures and better treatments, the St. Baldrick's Foundation, a non-profit on a mission to defy childhood cancers, introduces its 2020 Ambassadors. The five Ambassador families, each touched by childhood cancer, will share their journeys of struggle and triumph, hope and despair, and give people a glimpse into their lives and what comes after hearing those life-changing words, "Your child has cancer."

Coming from all areas of the country, ages, disease types and stages of their cancer journey, the Ambassadors represent the more than 300,000 kids diagnosed with cancer each year worldwide and serve as a reminder that cancer doesn't discriminate.

This year's Ambassadors are:

Seth and Joel Decker are identical twins with a very special bond not even cancer could separate. The twins did everything together. Along with their older brother, Nathaniel, they filled the Decker home with the sound of laughter and play. Seeing the boys push vehicles around and make loud noises or roar and stomp around pretending to be dinosaurs were familiar sights. But in an ironic twist of fate, the twins were both diagnosed with cancer: Seth was diagnosed with a rare form of acute myeloid leukemia (AML) in December 2016 and three months later, a biopsy revealed Joel also had AML. With the overlapping diagnoses and treatments, the family endured months of separation and treasured the few weeks they could be together at home. Despite both boys receiving bone marrow transplants and enduring complications from the procedures, they relapsed. Surrounded by their loving family, Joel died November 2017 at the age of 3, followed by Seth in May 2019 when he was 4 years old. The Decker family firmly believes much more research is needed for AML, especially when the disease has relapsed. They have created a St. Baldrick's Hero Fund in memory of Joel and Seth to support research that will help find new treatments and cures so other families won't have to say goodbye too soon.

Hudson Walker, 1, from Englewood, Colo., was diagnosed with Ewing sarcoma in February 2019, a rare disease that makes up only 2 percent of all childhood cancers and is very uncommon in babies. Chemotherapy began right away and surgery to remove her scapula resulted in the good news of clean margins. Hudson had a positive attitude through it all, even looking forward to going to the hospital to see the doctors, nurses and therapists who had become her friends. While happy she is cancer free after treatment, her parents know that her cancer journey is not over. As she grows, they will need to remain vigilant with monitoring potential late effects from chemotherapy. But for now, Hudson is enjoying each day, loving her family and her favorite things: queso, french fries, the color pink, unicorns, the movie Aladdin, and all kinds of music – especially Lizzo and Kacey Musgraves. Armed with her sparkling personality and the bravery many of us only dream of, Hudson's family is confident she can take on any challenge life puts in her path.

Micah Bernstein, 9, from Carlsbad, Calif., has spent the bulk of his life fighting cancer. Micah was diagnosed with neuroblastoma in March 2012 at just 15 months old. He's had three surgeries, 21 cycles of chemotherapy and 36 sessions of radiation. Two separate phases of his treatment were centered around Unituxin, an immunotherapy drug developed with support from St. Baldrick's that received FDA approval while Micah was in treatment. Since then, Micah's blood work and scans have been clear for more than five years and he's been completely off treatment for nearly a year, which means an important milestone for Micah – his first survivorship clinic visit in 2020. Micah is very interested in science and wants to become a doctor. He even has a message for researchers involved with St. Baldrick's: "Thank you for creating new medicines for kids with cancer. Those medicines save kids' lives, and one of them saved mine." Micah's parents, Jeff and Kate, are very passionate about helping to fund the most promising childhood cancer research and have established a St. Baldrick's Hero Fund, the Mighty Micah's Mission Fund, aiming to raise at least $100,000 to fund neuroblastoma research.

Austin Schuetz, 11, from Fall River, Wis., was diagnosed with a high-risk form of acute lymphoblastic leukemia just before his third birthday. Austin faced 3 ½ years of treatment including intense chemotherapy, bone marrow biopsies, and six days of daily cranial radiation. Before Austin could finish treatment, he relapsed. At that point, a bone marrow transplant was his only option for a cure. When that didn't work to eradicate the leukemia, Austin needed a miracle. That miracle came in the form of a gene therapy that uses a child's own immune system to fight the cancer. Austin was accepted in a clinical trial, supported by the St. Baldrick's Foundation, that would collect his T-cells in a lab and train them to seek out and kill the cancer cells. The treatment worked, and Austin is now six years out from the clinical trial that saved his life. Because of research, Austin can enjoy the things he loves, like video games, basketball and Nerf guns.

Shamari Brazile, 14, from Cleveland Heights, Ohio, was diagnosed with osteosarcoma when she was 13 years old. In November 2017, during the middle of basketball season, she complained of pain in her right hip. When the pain didn't improve, tests revealed a mass on her pelvis. Shamari was diagnosed with osteosarcoma in March 2018 and started treatment right away. She endured 10 weeks of inpatient chemotherapy and surgery to remove the tumor, followed by 18 more weeks of chemotherapy before finishing treatment in December 2018. Less than three months after her last treatment, Shamari was already back on the lacrosse field, playing her favorite sport. In her free time, she also enjoys hanging out with friends, listening to music, drawing, teaching herself how to play the ukulele and writing short stories.

St. Baldrick's Ambassadors and their families will act as spokespeople for the St. Baldrick's Foundation, attend events and fundraisers and share their stories to educate the public about the realities of childhood cancers.

Continue following these six courageous stories on the St. Baldrick's blog and social media channels: Facebook, Twitter, YouTube and Vimeo. To learn how you can get involved visit www.StBaldricks.org.

About St. Baldrick's Foundation
As the largest private funder of childhood cancer research grants, the St. Baldrick's Foundation is leading the charge to take childhood back from cancer. St. Baldrick's funds some of the most brilliant childhood cancer research experts who are working to find cures and better treatments for all childhood cancers. Kids need treatments as unique as they are – and that starts with funding research just for them. Join us at StBaldricks.org to help support the best childhood cancer research, no matter where it takes place.

SOURCE St. Baldrick's Foundation