ALBUQUERQUE, N.M. (KRQE) – It’s every kick, every cry and every smile of their 6-month-old baby that allow the Nunez family to breathe a little easier now that they’re back home in Albuquerque.
KRQE News 13 first introduced you to Amylea Nunez in February. Amylea was admitted into the hospital just days after being born in December. With doctors in New Mexico no longer able to help, the family was flown to the Children’s Hospital in Aurora, Colorado.
“I mean the day that we left New Mexico, I didn’t know what to expect or if I was going to bring her back home with me,” Nicole Nunez said.
Doctors in Colorado diagnosed Amylea with a rare case of epilepsy.
“There’s times were she would only wake up every other day,” Ernie Nunez said. “Just sitting there while she’s having a seizure, it’s horrible and there’s nothing you can do.”
The family said in the beginning some of Amylea’s seizures would last up to 45 minutes.
“The worst one was an hour long,” Ernie said.
The family said doctors had Amylea on eight different medications and left them with little hope.
“I’d tell them no anytime they wanted to add more just because I know what they do to a child so young,” Nicole said. “I wanted her to have some type of quality of life.”
So the family began searching for another alternative. They said they fought with doctors to start Amylea, while still in the hospital, on a controversial cannabis oil known to treat epilepsy in children. Although doctors gave the “okay,” they are not allowed to administer the oil. According to the family, at 2-months old, Amylea was the first and the youngest patient to receive this type of treatment at the hospital. After just three months of using the oil the Nunez family got to see their baby lift her head for the very first time.
“It was kind of like I could tell the doctors, ‘Look what she’s capable of’ compared to them saying she’s never going to be able to hold up her head,” Nicole said.
The family returned to Albuquerque last week. They said it was scary to lave Amylea’s doctors up in Colorado.
“They were good to us,” Ernie said.
“It’s also scary to leave all the technology they have up there,” Nicole said. “We don’t want to have to take another emergency flight to Colorado.”
The family said they know there’s still a long road ahead.
“We still have to get her back to eating by mouth because the seizures did so much to her ability to be able to actually take a bottle like a normal baby,” Ernie said.
They said they also have plans to help change laws in New Mexico; so that other families going through a similar hardship can have an easier fight.
“Always speak up for your kids,” Nicole said. “I’m very glad I fought.”
Amylea is on the hemp oil called Haleigh’s Hope. The family still makes trips back to Colorado for check-ups. Nicole said they’re also in the process of applying for a medical marijuana card here in New Mexico.