THREE RIVERS, Mich. — A West Michigan family is mourning the loss of their four-year-old daughter after she died suddenly this past weekend.
Ryleigh Hart died Saturday. She had been living with a rare neurological disorder called alternating hemiplegia of childhood (AHC), which research has shown only affects about one in every one million people.
The disorder, which is caused by a rare genetic mutation, caused temporary paralysis of Ryleigh’s limbs and sometimes her entire body. Rebecca Hart, her mother, said the paralysis could last anywhere from 10 minutes to 16 days, Ryleigh’s longest episode.
“We always felt helpless,” said Arthur Hart, Ryleigh’s grandpa who agreed to speak on camera with FOX 17 on behalf of Ryleigh’s parents. “I’m sure even Mom and Dad felt helpless, because there was just nothing you could do, it’d just happen.”
“She wasn’t able to control her body temperature, so any kind of change would put her into one of these episodes, and all you could do was hold her and love her.”
The rare disorder also brought on severe respiratory issues that put Ryleigh more at risk for viruses, even the common cold. According to her family, doctors told them the enterovirus was to blame for Ryleigh’s most recent and now fatal episode.
“We’re still trying to figure out why and how,” Hart said. “Everything was perfect Friday, and you wake up Saturday morning, and your whole life changes. Just shattered.”
FOX 17 was unable to confirm with doctors whether Ryleigh indeed had enterovirus or the specific D-68 strain. The Michigan Department of Community Health is still waiting on test results from the Centers for Disease Control to confirm if any known enterovirus cases in Michigan have tested positive for the D-68 strain.
For now, Hart says he’s still in shock and trying to find peace, but knowing his granddaughter is now with his wife, who passed away suddenly last year, helps the process.
“They were extremely close. Now it kind of helps to know that she went up to be with grandma, and she’s got grandma to take care of her, and she’ll take care of grandma,.”
Visitation was held Wednesday evening in Three Rivers at Hohner Funeral Home. Funeral services are set for Thursday morning in Three Rivers as well.