ALBUQUERQUE (KRQE) – An Albuquerque couple is fighting to save their 2-month-old daughter and Thursday, they made history at a Colorado hospital.
Amylea Nunez has suffering from seizures since she was born, and doctors can’t find the cause.
“She has a rare form of epilepsy,” Nicole Nunez said. “They don’t know exactly the type.”
Amylea was born in December, but all she knows is the inside of a neonatal intensive-care unit.
“About a day after we went home from delivery is when she had her first seizure,” Nicole said.
Doctors in New Mexico could no longer help, so the family was taken to the Children’s Hospital in Aurora, Colorado. They’ve been there for the last two months. Amylea’s mother, Nicole, is with her full time. While her father, Ernie Nunez, travels back-and-forth to Albuquerque, working and taking care of the couple’s other children.
“It’s been a drastic change,” Ernie said. “It’s been so hard for all of us.”
Ernie said the toughest part is being away from his daughter and wife while they stay in Colorado.
The family said doctors are treating Amylea with several different types of medications. In the meantime, they’ve been searching for another alternative.
“The medication she’s on is hard for her liver and so we’re trying to do something different that’s not so bad on her body,” Ernie said.
Nicole has done her research and found that alternative.
It’s called Charlotte’s Web. It’s a cannabis oil known to treat epilepsy in toddlers and children. The THC level is less than one percent so children don’t get high, but it’s controversial.
According to the family, at 2-months-old Amylea is the first and the youngest patient to receive this type of treatment at the hospital.
“I sat for a good three weeks fighting with the doctors and trying to talk them into giving me the okay,” Nicole said. “I’ve been working with the case study team and the neurology team here at children’s and I’m hopeful this will work.”
Today, the hospital gave that “okay” the family has been waiting for.
“For us to get the approval for us to administer it while she in the NICU while she’s a patient…it’s kind alike a miracle,” Nicole said. “Because they were completely against it saying, ‘No you can’t do it, you have to wait until she’s an out-patient.”
Although doctors gave the okay, they are not allowed to administer the oil. The family has to give the doses to Amylea. The family said nurses already noticed a difference in her being more alert than usual, and she’s only had two doses.
Amylea is now part of a case study that includes using the oil. So the family plans to be out there for another four months, while they continue to treat her.
A GoFundMe has been set up in Amylea’s name.