The parents of two boys killed by a mysterious polio-like illness are accusing the CDC of deliberately covering up their sons’ deaths.
Alex Bustamante, six, died in May this year, and five-year-old Carter Roberts in September – both two years after contracting acute flaccid myelitis (AFM).
The disease, which has no known cause and paralyzes children within days or even hours of contracting it, has swept the US this year, with 80 confirmed cases and another 219 suspected cases.
While CDC officials say they are doing everything to contain the mysterious outbreak, the parents of Alex and Carter claim the agency is prioritizing its own image by not reporting child deaths.
They are hardly the only critics – some CDC insiders have even admitted the situation is being badly handled, despite having the experience of a similar outbreak in the US in 2014.
‘I feel like they’re just sugar-coating this,’ Alex’s mother Katie told CNN. ‘It eliminates my trust in the CDC.’
Carter’s mother Robin, a healthcare IT specialist, told CNN: ‘They’re doing a s*** job of measuring this, excuse my French.’
Alex Bustamante, who died in May after two years battling acute flaccid myelitis
Carter Roberts, who developed AFM in July 2016, and died in September this year
Carter seemed to have recovered and was back at school but in September he started struggling to breathe
The CDC’s principal deputy director, Dr Anne Schuchat, said she cannot be sure why the deaths haven’t been reported but speaking to CNN she put it down to a delay in physicians reporting.
Acute flaccid myelitis is a type of inflammation of the spinal cord, which leaves patients weak and limp.
Within hours, they start to lose control of their body – their eyes, their limbs, their tongue.
Soon after, paralysis sets in. While most retain their sensory functions, bowel functions and bladder functions, they lose the ability to move independently.
The CDC believes it is caused by a mystery virus but despite years of research, nobody has been able to identify the elusive culprit.
The agency is also stumped by the fact that AFM seems to resurge every other year, which could imply some kind of environmental factor, but may be down to something else entirely.
CNN’s report touches on two of the families blindsided by a disease that nobody understands.
Alex developed a headache in 2016, which soon progressed to paralysis, requiring a ventilator 24/7. After fighting for two years, he died in May.
Carter seemed to have come down with a normal virus in July 2016. He threw up his food one night, and the next day had a fever.
But because he’d eaten dinner without vomiting his parents thought he may be on the up.
However, the next day Robin found Carter on the floor of his room unable to move his legs, right arm and head.
They went straight to hospital, but nothing could be done.
Within days, he was paralyzed from the neck down, and needed to be put on a ventilator. After two years of care he was strong enough to go back to school. But one day, on September 22 this year, he started struggling to breathe.
An ambulance came but couldn’t save him, and he passed away shortly after assuring Robin that he was ‘fine’.