Parents hopeful after President Trump signs childhood cancer STAR Act

Posted: 1:28 PM, Jun 07, 2018
Updated: 2018-06-07 23:04:51Z
Parents hopeful after President Trump signs childhood cancer STAR Act

President Donald Trump signed the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act into law on Tuesday.

According to the National Cancer Institute, children with cancer is the leading cause of death past infancy among children in the U.S.

The American Childhood Cancer Organization said there are about 15,780 children between the ages of birth and 19-years-old who are diagnosed with cancer in the U.S.

Marcia Bayer's 4-year-old daughter has cancer.

"Once you hear those four words, your life is changed," Bayer said.

Marcia and her husband Jonathan were foster parents for Hannah when she was a baby. Hannah wasn't developing as quickly as she should be, so they decided to figure out what was going on.

Doctors did an MRI on Hannah and found a mass on her spinal cord.

"He said 'This right here is a mass, I don't know what it is, but I need to take it out right now,'" Marcia said.

The mass wrapped around Hannah's spinal cord from her brain stem to T-11, the second to last vertebrae in her back. Marcia said it consumed over 90 percent of her spinal cord.

Hannah was diagnosed with astrocytoma of the spinal cord, a rare cancer for children, at nine-months-old. 

"In our four-year journey we've only met three other kids with spinal cord tumors in the United States," Marcia said. 

After President Trump signed the STAR Act into law this week, Marcia said she got the chills.

"We want to give kids a chance and the STAR Act gives us hope," Marcia said. "We want to know that we're being heard, we're being recognized and its a step in the right direction."

The STAR Act will help expand opportunities for childhood cancer research, improve childhood cancer surveillance and improve quality of life for childhood cancer survivors.

"One of the biggest issues children face is that they develop secondary issues because of the chemo they were given to save their lives," Marcia said.

The STAR Act will also add a pediatric oncologist on the National Cancer Advisory Board.

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