‘He was full of love:’ 5-year-old passes away after battle with rare childhood disease

(Robin Roberts (custom credit))
Updated: Oct. 23, 2018 at 6:37 PM EDT
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CHESTERFIELD, VA (WWBT) - A Chesterfield family is on a mission to save others after their kindergartner recently died from a rare illness. Carter Roberts fought a two year battle with Acute Flaccid Myelitis, also known as AFM, he passed away at just 5-years-old on September 22.

“It was really hard, to watch your healthy, vibrant toddler lose all of his physical ability, especially in a little boy with so much energy,” said Carter’s mom, Robin Roberts. “For all the things he has normally done to not exist, to spend months in the hospital, to fight for the equipment, the medicine, the doctors and to try to maintain a semblance of being a family.”

On a Friday night in July 2016, Roberts said the then three and a half year old got sick after eating pizza with their family. By the end of the weekend, Carter’s health took a turn for the worst.

“He was on the floor in a ball, saying ‘mommy, help me, help me,’ and I went to stand him up and his head flopped to one side and he was weak to stand on his own, and his right arm, he couldn’t do anything with it," Roberts explained.

Carter was rushed to the hospital, where the decline only continued, he was eventually paralyzed from the nose down, and unable to breath without some form of assistance.

“After three MRI’s and ruling everything else out, that same doctor, Dr. Connelly in ER, brought up an article and he and the intensivist spoke,” she said. "They got another opinion about his MRI, the test of his spine that they had done, and they said we think he has acute flaccid myelitis, which is known as AFM. "

The rare childhood disease has been said to be polio-like, attacking a child’s spine and causing weakness to limbs and loss of muscle tone.

“It can look like a respiratory cold, it can look like a lot of things, but the things to be vigilant about are really AFM specific symptoms,” Roberts said. “That difficulty with swallowing, difficulty with limbs, that weakness.”

As the CDC continues to investigate 155 possible cases of AFM, Roberts says there are children in the United States who have not been counted that need to be in, and she is on a mission now to push for more research, funding and support in general for families suffering.

Their family is a part of an AFM support group on social media that Roberts said has grown from 273 families to 500 in the last two years.

“It’s scary, but there are communities of people out there, doctors dedicated to this, really trying to figure out this puzzle that is AFM,” she said.

During their family’s journey, the Roberts have been shown kindness that they have called their silver lining in their struggle. From their bathroom renovated to be made adaptable for Carter for free, to meals, visits and even an accessible van donated to them. It has all pushed the Roberts to pay forward the kindness as Carter’s legacy continues.

While the mystery remains, Roberts is not giving up her fight to be a voice and hopefully find a cure one day. Next week, Roberts is heading to Capitol Hill to lobby alongside senators and expert physician, speaking on behalf of her family and hundreds across the country.

“If it can happen to us, it can happen to anyone, and I think that is what I mean when I say that - not to scare someone but to create an awareness,” Roberts explained. “[I] have always felt, and now possibly more than ever after Carter’s passing, compelled to make their voices along with our voices heard, because something needs to be done.”

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