It’s been a long journey for New Mexico’s youngest cannabis patient, 8-month old 
Amylea Nunez. Born with a rare type of epilepsy, she suffered seizures nearly every half hour until her parents discovered high-CBD, low-THC cannabis oil as treatment.
Her parents say that cannabis has allowed her to enjoy a quality of life that she would otherwise not have.
Amylea’s journey to health has been nothing short of miraculous. Without medical cannabis, “I wouldn’t have the same baby,” Nicole Sena, Amylea’s mother, said.
Many parents face stigma when they want to administer medical cannabis to their child, and Sena’s story is no different.
From discovering CBD oil to fighting with medical professionals to administer it, Sena had to advocate for her daughter every step of the way.
Today, Nicole Sena and her husband Ernie Sena are telling their story in the hopes of paving the path for other parents who want to learn more about medical cannabis, but are afraid of the stigma associated with administering it to their child.
A Rare Type of Epilepsy
A Rare Type of Epilepsy Before she became the youngest cannabis patient in New Mexico, Amylea Nunez was born at Presbyterian Rust Medical Center in Albuquerque on Dec. 7, 2015. Immediately, Sena noticed that her infant daughter rolled her eyes back, but doctors told her that it was typical of newborns whose eyes were still adjusting to the light.
Four days after they brought her home from the hospital, Amylea’s parents learned that what their daughter was experiencing was not only far from typical, but also extremely rare.
During a night that would terrify any parent, Amylea’s father noticed that his daughter was limp and pale, Sena said. “She had this really hard struggle, she was struggling to breathe, she wasn’t doing anything, she was just limp and lethargic,” Sena said. Sena, who has a medical background, immediately recognized the signs of a seizure.
Ernie called emergency services, and soon about ten paramedics and the fire department were in their living room. Paramedics took Amylea to Presbyterian Hospital. “Everybody in the room was just terrified. And you could tell the paramedics, when they were here, were pretty nervous because her heart rate was so low, her oxygen level was really low and her temperature was way, way below average, Sena said. It was really scary.”
Doctors diagnosed Amylea with a rare type of epilepsy that is caused by a genetic mutation. Only about five other children worldwide experience the same type of tonic-colonic seizes that Amylea has, Sena said.
Serious Side Effects
Sena and Ernie took their daughter to Children’s Hospital of Colorado for further treatment. Physically, Amylea showed about 15 seizures per day, but EEGs revealed that she was also having subclinical seizures, which cannot be observed clinically.
Amylea was having seizures every thirty minutes to an hour. Hospital staff asked Sena to sign a DNR “because there was nothing they could do to possibly regulate her seizures,” Sena said.
Doctors worked to find Amylea a medication to treat her seizures, prescribing drugs like Versed, Ativan, Phenobarbital and Keppra.
Due to the side effects of the medications, Amylea also needed drugs to regulate her body temperature, her cholesterol and her blood pressure. “She also had to have a heat lamp because she couldn’t regulate her own body temperature,” Sena said. “She would either go way below average, close to almost hypothermia, or super high, which would cause more brain damage to her.
Sena was concerned about the side effects of the drugs. She had been prescribed similar medications for her migraines and remembered the problematic side effects. Every time doctors would recommend a new medication for Amylea, Sena’s answer was, “let me research it first.”
Discovering Cannabis Oil
Before high-CBD cannabis oil, the prognosis for Amylea’s quality of life was discouraging. Although she was down to two seizure medications and on a B6 regimen, she barely opened her eyes during the day.
Sometimes, the medications made her sleep for two days straight. “If she was awake, she was awake for no more than two hours and she had no emotion behind her stare… you could tell there was no one in there, just a baby that had no emotion,”
Sena said. Researching treatments for her daughter’s epilepsy would soon pay off, however. Through the Internet, Sena discovered CBD. She ran across the story of Charlotte Figi, a little girl whose severe seizures were stopped by high-CBD, low-THC cannabis oil.
Charlotte had a cannabis strain named after her, Charlotte’s Web, and a foundation, Realm of Caring, was set up to help other parents find information about CBD oil. Sena contacted Realm of Caring to learn more.
She obtained Charlotte’s Web cannabis oil and was anxious to try it on Amylea, but soon discovered that treating her daughter’s epilepsy with medical cannabis would require the support of Amylea’s doctors, who were unwilling to give it.
Doctors told her it was against hospital policy. If Sena administered CBD oil, she could be escorted out of the hospital. Sena did not give up, and she was thankful to have her family’s support as she advocated on Amylea’s behalf.
Countless disagreements with medical professionals later, a neurologist finally agreed to support administering cannabis oil to Amylea, but only if Sena agreed to sign her daughter up for a case study.
Five Months Seizure-Free
Five Months Seizure-FreeAfter spending nearly four straight months in the hospital, Amylea was released. She was put on the Charlotte’s Web strain, but it was not an instant panacea. There were fewer seizures, but they were still present. Amylea was readmitted to the hospital. Sena kept researching. Through social media, Sena soon found a different strain called Haleigh’s Hope.
A Facebook friend, Bobby West, introduced her to Jason Cranford, the producer of Haleigh’s Hope whole-plant CBD oil. He met with Sena personally to give her the first bottle of Haleigh’s Hope for Amylea.
Haleigh’s Hope is made from whole-plant cannabis, meaning that producers include resinous buds in the formulation of the oil, rather than just the stalks and leaves of the plant.
A seizure-inducing fever sent Amylea back to the hospital twice during this time. She was taken off Versed. As soon as her daughter was released, Sena administered Haleigh’s Hope. Two days later, Amylea’s seizures stopped—and they have not returned.
Countless prescription medications had not helped Amylea, but cannabis oil did. Amylea hasn’t had a seizure in five months. Today, the baby that barely opened her eyes is laughing, playing and sleeping normally.
Spending the first four months in the hospital has meant that Amylea had some catching up to do (she’s at about six months of age now), but she’s gaining ground quickly. Amylea is a happy, healthy baby who is finally enjoying life thanks to cannabis oil.
Changing Cannabis Laws
Laws Amylea takes .15 ml of Haleigh’s Hope three times a day. The family struggles to obtain enough cannabis oil in New Mexico to continue treating Amylea’s epilepsy, so they drive to Colorado every month to buy it.
In August 2016, Sena was listed as the co-plaintiff along with Ultra Health in a lawsuit against New Mexico Department of Health’s Medical Cannabis Program, wanting to change the 450-plant limit imposed on producers in the state.
The restriction on the number of allowed plants means that producers are unable to supply Sena with the cannabis oil that Amylea needs, according to the lawsuit.
BY: LISA HLAVIN KA
