BREMERTON, Wash. – The death of 6-year-old Daniel Ramirez has sparked concern nationwide and in Washington state about a rare syndrome now linked to nine kids in our area.
Ramirez, the Bellingham boy, passed away Sunday. He’s one of nine children being investigated in Washington for AFM, or acute flaccid myelitis.
Even with the increase in cases, the Centers for Disease Control and Prevention in Atlanta says it will affect fewer than one in a million.
A Bremerton teen, who survived AFM in 2014, is hoping his story can help others.
By all accounts, 15-year-old Hayden Werdal is a survivor.
“We do the pool therapy but after that, I just have to lay down,” said Werdal of his current rehabilitation regimen. “I’m so out of energy from doing so much.”
After contracting what doctors believe was AFM in 2014, the Bremerton teen lost most of his movement from the neck down, but he’s still fighting.
“His plan is to graduate from high school and go off to college, so his plan is to be independent,” said Hayden’s mother, Heather. “This is our new normal, and he’s going to have the best life that he can have.”
Hayden’s case is rare, but the questions surrounding AFM have resurfaced after the state health department reported nine cases linked to the polio-like illness.
“We want to fight for a vaccine, but how do you fight for a vaccine that you haven’t defined?”asked Heather Werdal.
Dr. Catherine Otten at Seattle Children's Hospital is one of the local doctors working to understand AFM.
“Accute Flaccid Myletitis is a rare neurologic condition and it causes limb weakness and we don’t know the cause right now,” said Otten.
Although rare, Otten said the long-term health effects can be severe and include paralysis.
“The most striking feature is limb weakness in an arm, or a leg or both, and that can range in mild weakness to almost absence of movement, being unable to move that limb,” said Otten.
But with no clear cause or cure, families like the Werdals are left wondering who’s next and if a cure will come soon.