Family of Pueblo teen speaks on efforts to get bill through Congress
December 15, 2025
James Bartolo
Pueblo Chieftain USA TODAY NETWORK
Before it was named after a Pueblo teen, what has evolved into the Mikaela Naylon Give Kids a Chance Act passed through the U.S. House but failed to get through the U.S. Senate on multiple occasions.
On June 8, 2022, the House passed the Give Kids a Chance Act—proposed legislation intended to accelerate development and improve access to treatment of rare diseases in children. However, the legislation did not advance through the Senate that year. It was reintroduced, passed by the house and was initially part of a year-end spending package in 2024. The Give Kids a Chance Act was eventually cut from the package.
What is now the Mikaela Naylon Give Kids a Chance Act passed through the House on Dec. 1, 2025 and has been introduced to the Senate by Sen. Markwayne Mullin and Sen. Michael Bennet. Mikaela’s family is “cautiously optimistic” the bill will pass through the Senate before Christmas.
“We’re hoping because our children deserve better and even though it is not going to benefit Mikaela, it’s going to benefit other kids,” Mikaela’s mother Kassandra told the Chieftain.
How Mikaela Naylon fought to ‘Give Kids a Chance’
Mikaela, a16-year-old Pueblo Central High School student, died on Oct. 29 following an over five-year fight with osteosarcoma — a rare form of bone cancer found primarily in children and teens. Despite her reserved nature, Mikaela took opportunities to tell her story if she believed it would help other children fighting rare diseases.
As a member of the MIB Agents Osteosarcoma Alliance Junior Advisory Board, Mikaela traveled to Washington D.C. and participated Kids v Cancer’s youth advocacy initiative “Climb the Hill” in September to share her story with members of congress.
“Two weeks prior, she had just finished radiation and so she really just wasn’t feeling very well when we were out there,” Kassandra said. “But she still went. She still wanted to be there. That was something that was very, very important to her.” Mikaela returned home for a few weeks before attending a workshop put on by the FDA and Osteosarcoma Institute in early October. At the workshop, she spoke about the importance of improving treatments for osteosarcoma. Kassandra told the Chieftain that despite advancements in treatments for other diseases, treatment progress has remained stagnant for “at least 40 years.”
Upon diagnosis, osteosarcoma patients undergo MAP chemotherapy that includes doses of methotrexate, doxorubicin and cisplatin. In addition to chemotherapy, patients also may undergo multiple surgeries including limb salvage or amputation surgeries.
Mikaela’s treatment included multiple rounds of chemotherapy, amputation of a leg and a double thoracotomy to remove cancer that had permeated into her lungs. Before her death, she had asked to have her body donated to science in efforts to find a cure for the disease.
“Mikaela was a thriving student at Central High School and was a junior this year... and was a pretty amazing young adult,” Kassandra said. “We are so incredibly proud of the work that she did prior to her passing.”
How legislation would improve treatment rare diseases
The Mikaela Naylon Give Kids a Chance Act incentivizes companies to develop treatments for rare childhood diseases by reviving the Pediatric Priority Review Voucher Program. According to proponents of the bill, treatments for rare pediatric diseases have developed slower than treatments for more common diseases because pharmaceutical companies have less of an economic incentive to treat them.
Additionally, the Mikaela Naylon Give Kids a Chance Act allows children to participate in combination trials for treatments that target pediatric cancer.
“In childhood diseases, they have their protocols that they have to follow,” Kassandra said. “But if there is no advancement because there’s no money, they stay stagnant.”
Kassandra, Mikaela’s father Doug and brother Ayden were in Washington, D.C. to support the bill’s passage through the House. Following its passage, the family shared a statement that called the bill’s passage through the House an “extraordinary honor” and a “powerful tribute to Mikaela’s life.”
“Though our hearts will forever ache from losing her after a five-year battle with osteosarcoma, we are filled with pride knowing that her courage has helped spark meaningful change for children across the country... Mikaela faced everyday with hope, purpose and a fierce determination to make the world better for the kids who would come after her,” the statement reads.
The statement shared by the family also thanks Rep. Michael McCaul, Rep. Debbie Dingell, Rep. Gus Bilirakis, congressional staff that championed the bill, Kids v Cancer Founder and Executive Director Nancy Goodman, MIB Agents President Ann Graham and the MIB Agents Junior Advisory Board.
“Our greatest hope is that this moment brings comfort, strength and renewed possibility to families in the hardest battles of their lives,” the statement reads. “Mikaela’s legacy will live on in every child who now has a better chance.”
Pueblo Chieftain reporter James Bartolo can be reached at JBartolo@ gannett.com. Support local news; subscribe to the Pueblo Chieftain at subscribe.chieftain.com.