CLEVELAND (WJW) — Some of Ohio’s most vulnerable families are devastated to learn they are not in Group 1B and not yet eligible for the COVID-19 vaccine.

“We had been thinking about being on the list and being ready to get the vaccine, then realizing we’re not on it anymore. It’s kind of sad,” said Nikki Montgomery.

Montgomery’s 9-year-old son Ritchie was born with Congenital Fiber-Type Disproportion Myopathy — a very complicated disorder that requires around-the-clock constant care. 

“Basically his muscles don’t have the right balance of the right muscle cells so his muscles are really weak and that affects his respiratory system, that affects his heart, it affects every system in his body,” said Nikki.

She and her husband have not left home since March except to take Ritchie to doctors appointments that were absolutely necessary.

Additionally due to the pandemic in-home nursing care visits have been dramatically reduced.

The thought of finally getting the vaccine had offered a glimmer of hope, but was taken away this week when they realized residential, individual caregivers were no longer listed in Group 1B.

“The vaccine is something we hoped for to lessen the risk and fear we feel about the virus coming into our home,” said Nikki, “I’m afraid if one of us gets it, or all of us, what would happen here. It’s not unheard of that a whole family could be taken out by COVID. I don’t want that to be my family.”

Many parents are feeling equally upset and concerned.

“They’re exhausted and there’s no end date in sight,” said Sarah Rintamaki, Executive Director of Connecting For Kids.

Connecting for Kids is a non-profit that provides support for families of children with developmental and other special needs and/or concerns.

Rintamaki says, parents and caregivers were on the initial list released by Gov. Mike DeWine, but just learned that the list has changed.

“It’s like you’re on the list, and now you’re not on the list,” said Rintamaki.

She says local health departments couldn’t offer an explanation except to say the state sets the groups.

Currently Group 1B includes people 65 and older, individuals with severe congenital developmental or early onset medical conditions and adults/employees in K-12 schools.

Caregivers in group homes and congregate care facilities fell under Group 1A.

But Rintamaki argues, these parents need it just as much and perhaps more, because their children are extremely vulnerable and the vaccine is not approved for kids.

“The No. 1 thing parents tell me is ‘What happens if I get sick…who’s going to care for them?'” said Rintamaki. “Because their children are so medically fragile.”

Some of the children are in wheelchairs, others have serious heart and lung conditions and some have severe autism.

“No one can take over the care of child with severe autism with major behaviors,” said Rintamaki. “Especially if they [caregivers] get sick, they’re contagious so who’s going to come over to help in that situation?”

The caregivers are now pleading with the state to reconsider and put these extremely vulnerable families back on the list.

“I hope they realize that was an omission and not a good one,” said Nikki, “Hopefully there will be a policy change and they will be moved up, yeah.”