WASHINGTON (WUSA9) -- The government shutdown could actually be deadly for some people.
Every week, some 200 new patients begin clinical trials at NIH in Bethesda and other hospitals.
A little girl from Waldorf, Maryland was supposed to start a clinical trial for her cancer next week at Children's Hospital in Philadelphia.
But, the shutdown has put her treatment and hope for survival on hold. Eight year old Maddie Major doesn't look sick at all. But this week, her Leukemmia came back for the fourth time.
"You would never know she has cancer. Even on her worst day shes still smiling," said Kelsey Major, 22, Maddie's step sister.
Maddie is so self-assured she has no problem scolding her five older brothers and sisters.
"How do you not like cookies?" Maddie remarked during a conversation about Girl Scout cookies.
"When she relapsed, her mother started crying and she looked at her and said, 'Why are you worrying? I'm going to be fine," Kelsey recalled.
"I hate it when people cry," said Maddie.
Her mom, Robyn Major, has reason to cry. The clinical trial Maddie now needs, cannot be approved by the FDA, because the FDA is shutdown with the rest of the federal government.
Robyn says Maddie's cancer pre B cell ALL is curable in 90 percent of the cases. Her daughters is in the ten percent category. Traditional treatment like chemo has not worked.
"For Maddie, this is truly life or death. This isn't a game. This isn't pushing one ideology over another. This my baby's life," said Robyn.
About eight months ago, Maddie when through a clinical trial that worked. She was clear of cancer. But now that's she has relapsed, she needs another, more intense clinical trial, but because of the shutdown, her treatment is in limbo.
"It doesn't just affect people in jobs, children trying to survive," said Kelsey.
"While they act like children, they should take a que from my child and act like her. Because she is eight, and showing more maturity than any of them," said Robyn.
Maddie says she has only one word to teach the lawmakers how to come together. "Love. My only answer is love."
Ironically, two weeks ago, Maddie and her parents visited Capital Hill asking lawmakers to provide more funding for pediatric cancer research. Robyn Major doesn't understand how Congress can approve salaries for military service members, and not life-saving treatments for children.
BY Peggy Fox: WUSA
Gannett/WUSA
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