MOSELEY, VA (CNN) – Parents are worried about the rare polio-like illness, acute flaccid myelitis, that’s paralyzing children across the country.
Some are accusing the Centers for Disease Control and Prevention (CDC) of underreporting deaths and hiding information from the public.
Robin Roberts is one of those parents. Her young son Carter passed away after being diagnosed with AFM.
Carter became paralyzed below his neck by the polio-like illness before he passed away in September at the age of 5.
And he’s not the only child to succumb to AFM this year. At least one other child, 6-year-old Alex Bustamante, lost his battle with AFM in May.
“But the CDC says no AFM deaths in 2018,” Elizabeth Cohen, CNN’s senior medical correspondent, said to Roberts.
"That's not true," Roberts said.
The CDC did say during an Oct. 17, 2018, press briefing that “we know of one death in 2017 in a child that had AFM,” but officials didn’t say AFM was the cause of the child’s death.
"If you could be in a room with the director of the CDC, what would you say to him?" Cohen asked Robin Roberts and Chris Roberts, Carter’s father.
"Just wake up and do your job. Tell us what you're hiding," Chris Roberts said.
Cohen asked Dr. Anne Schuchat, the principal deputy director of the CDC, why the agency is reporting zero deaths from AFM in 2018.
"The reporting of the disease has a lot of steps,” Schuchat said. “So, there may be a lag … we are working 24/7 to increase recognition, to get the reporting into the system.”
"The parents think the CDC is hiding something," Cohen told Schuchat.
"OK, I'm so sorry to hear that,” Schuchat said. “I'm just very committed on behalf of the agency to share what we know when we know it."
The CDC’s own medical advisers on AFM who’ve spoken to CNN said the lag in reporting the deaths is too long.
Parents have also criticized how the agency has handled the outbreak.
"If you could give the CDC a grade for how they've handled AFM, what grade would you give them?" Cohen asked a group of parents.
"F," the parents answered.
Carter’s family worries about how the CDC will learn from the deaths if they don’t recognize them.
"I'd hate to think that there would be another parent crying their eyes out because their child's in an urn," Robin Roberts said.
Now the Roberts are left to remember their son, who had just started kindergarten when he died.
"He was super smart. And I think his backpack is probably the hardest thing to see," Robin Roberts said.
The Roberts hope Carter’s death will be recognized and will make a difference.