Utah families say more needs to be done for kids with cancer, and specialty license plates will help

A South Jordan mother has teamed up with Sen. Aaron Osmond to pass a bill creating a specialty license plate for childhood cancer in Utah, in hopes of raising money and awareness.

Nearly 850 people have committed to buy the plates. That's nearly twice the number required to ask the Legislature to cover the start-up fee for a special license plate — a level of interest that Osmond said will be "very compelling" for his colleagues and create a "high likelihood of passage."

Krystal Hansen, the mother spearheading the project, said money raised from the license plates would go to Primary Children's Hospital, where it would be divided equally between the childhood cancer research team and the Merrill floor, where the oncology department is located.

"The new license plate will shed more light on childhood cancer, opening doors for awareness, additional research and increased support for families struggling with this difficult issue," said Bonnie Wardle, parent support coordinator at Primary Children's.

Merinda Reeder, of Sandy, is one person who's signed Hansen's petition. She said her family's life has changed dramatically in the two years since acute lymphoblastic leukemia was diagnosed in her daughter Emma, then 4 years old.

"We had her in city soccer, and at first she loved it, but then she didn't want to play because her feet hurt, her legs hurt," Reeder said. "Eventually, it got to the point where she wouldn't walk."

Reeder said after going through chemotherapy and losing her hair, Emma's condition has improved. This year, she's able to attend school and take dance lessons.

There are still challenges.

"She's at risk for lethal infection," Reeder said. "When most people can just take a Tylenol, we have to go to the emergency room to be sure she's not getting an infection."

Still, she added: "It's our normal, and we just live with it."

For more than a decade, as the Reeders and other Utah families have adapted their lives to cancer diagnoses, Hansen has been fighting to increase awareness of childhood cancer. Her son Christian died 10 years ago, just a year after he was diagnosed with neuroblastoma at age 3.

"I still fight for my son because I don't want ... I know he's not here, but I don't want to let him down," Hansen said.

Hansen said when they learned he had neuroblastoma, there weren't a lot of options for kids with that type of cancer who relapsed.

"We promised him we would continue to fight until there's better, and there's not better yet," she said.

Osmond has watched friends lose children to cancer, and said the subject affects him on a personal level.

"Very few members of the community ever approach me to actually run a piece of legislation. I'm certainly interested in supporting it, helping any family who's going through that difficulty," he said.

One statistic that gave him an extra push to get on board with Hansen's idea was that less than 4 percent of the National Cancer Institute's funding goes toward research on childhood cancer.

That statistic strikes a nerve with Reeder, who notes that, according to the National Cancer Institute, the average age of a child diagnosed with cancer is 6, while the average age of an adult upon diagnosis is 65.

"To only put 4 percent on someone who has a future, who has their whole life ahead of them as opposed to someone who has lived and learned and has grandkids ... I'm not saying we shouldn't be funding research for them too, but it's just a tragedy that we have to fight so hard to get noticed," Reeder said.

Raising awareness through license plates is something that may seem insignificant to some, Hansen said, "but to the childhood cancer community, it's huge."

"We are going to find our cures for these kids so that they can stop dying or stop living with missing limbs or less functions than regular kids," Hansen said. "Kids should be allowed to be kids, not stuck in the hospital with needles and IV tubes poked into them."

Osmond said thousands of Utah children face the "ravages and challenges of cancer," and this bill is "an opportunity for us to create awareness about the fact that there really isn't enough effort going on to save the lives of children, who really are the future of our state and country."

Many specialty license plates already exist in Utah, advocating for causes such as autism and pet adoption, and Reeder attributes the fact that there isn't one for childhood cancer yet to "a lack of awareness."

She said there is "no good argument" against adding one more for childhood cancer.

Osmond agreed, saying the high number of signatures and commitments show that sufficient funding can easily be raised to purchase the initial run of plates, which is the only reason he could think of that might impede the bill's passage.

Hansen said she is trying to get as many signatures as possible by the end of the year. Those interested in supporting the cause can find the petition online.

Osmond and Hansen first presented the proposal to the Legislature in February, but found out that the process to request special plates had changed. She and Osmond now plan on presenting their petition and proposed legislation at a hearing in January. If it passes, they then will have to secure at least 500 applications for the plate and submit them and the required fees to the Utah Division of Motor Vehicles, which will then begin production.

"We're hoping the plates will be on the road by next summer," Hansen said.

In the meantime, she said, there will be a "massive" gathering at the Capitol on Saturday for those advocating against childhood cancer. They will be using the hashtag #MoreThan4 to call for increasing funding for childhood cancer research to more than 4 percent.

mnoble@sltrib.com