The first time I spoke with 6-year-old Jaxen Donnelly, he interrupted my phone call with his mother and grandmother, whom he called Nonna.
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Within moments, his personality shone through. He was funny and energetic. He loved rock and roll and making people laugh.
That Christmas, Jaxen would spend the holidays in a hospital room after his family received the devastating news that medicine had little more to offer him.
As I celebrated Christmas with my own family, I kept thinking about him. I wondered what his mother and Nonna were experiencing beside his hospital bed. I wondered whether he would become the first child I had met through this work who would not survive.
Jaxen lived another six months before passing away in July.
He was the first.
I was already deeply committed to this work. But losing a child I had come to know made the stakes intensely personal. From that point forward, every statistic, legislative meeting and conversation about research carried a heavier weight.
According to the National Cancer Institute, cancer remains the leading cause of death by disease after infancy among children in the United States. Nearly 15,000 children and adolescents are diagnosed each year.
Statistics explain the scale of childhood cancer. They cannot explain what it feels like when a family is told that medicine has nothing left to offer their child.
Children are not little adults. Their bodies and brains are still developing. Their cancers are biologically different, and they deserve treatments developed specifically for them.
We know children with cancer need better options. We know their families need more support. What has been missing is the urgency — and the political will — to respond on the scale this crisis demands.
That is why U.S. Rep. Brendan Boyle of Pennsylvania is working to introduce the Ahmad Butler Pediatric Cancer HOPE for a Cure Act. The proposal would make a historic federal investment in pediatric cancer research. It would also establish a Community Funding Initiative through which schools, businesses and communities could help support that research through various efforts.
The bill is named for another child lost to pediatric cancer: Ahmad Butler, who died at age 6 from a rare brain cancer.
After Ahmad’s death, his grandmother, Latanya Morrison, refused to allow his life to be remembered only for the disease that took him. She walked 179 miles from Philadelphia to Washington, D.C., demanding that our nation do more for children with cancer.
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That walk became a movement. Now, that movement is taking the form of proposed federal legislation.
The HOPE for a Cure Act is one part of the federal response we are seeking. The Ahmad Butler Foundation is also calling on the president to consider a national emergency declaration and on the health secretary to evaluate pediatric cancer for a public health emergency determination under Section 319 of the Public Health Service Act.
These efforts are connected: One seeks sustained investment in research. The other seeks national recognition of the urgency confronting children and families.
During an April House Ways and Means Committee hearing, Boyle raised both the proposed legislation and the emergency declaration with HHS Secretary Robert F. Kennedy Jr. That exchange was an important moment, but it cannot be where this ends.
Every September, during Childhood Cancer Awareness Month, advocates ask Americans to wear gold in recognition of the children and families affected by cancer. This year, buildings, bridges, churches and landmarks will also shine gold through the Ahmad Butler Foundation’s Fight with Lights campaign.
This September, that action will take different forms. On Sept. 1, my wife and I will join volunteers to assemble care packages for pediatric patients at local hospitals throughout Central Florida.
But awareness must be more than symbolic. It must become a force for action. Florida’s congressional delegation can help make that happen.
Call or write your representatives and senators. Ask for a meeting. Urge them to support and co-sponsor the Ahmad Butler Pediatric Cancer HOPE for a Cure Act when it is introduced.
This September, remember Jaxen. Remember Ahmad. Remember every child whose family has been forced to hear that medicine has nothing more to offer.
Wear gold, light your community gold — and then turn that awareness into action.
Awareness matters. But our commitment to children with cancer cannot end when September does.
Jason Collins is a Central Florida pediatric cancer advocate and director of communications and external relations for the Ahmad Butler Foundation.
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