Meet Emili, a 3-Year Old Child with Epilepsy

/ / Featured, ECHO Families

Emili Zoe | Epilepsy

In the weeks that followed little Emili Zoe’s birth, her family was filled with all of the joys and adjustments of welcoming a newborn. And then, life took an unexpected turn. When she was just two months old, Emili had her first seizure. Although the future was uncertain and sometimes scary and daunting, her parents faced the challenges with open minds and unflinching determination. The relief they found in CBD changed their daughter’s life, and shaped the course of their family’s future.

“The first seizure she had was when my heart dropped to the ground,” recalls Marlene Vaquera Ibarra, Emili’s mother. Her eyes still fill with tears, remembering the challenges that arose over three years ago.

“She began to shake in bed. She raised her arms and started getting tonic. She was stiff like a rock,” Marlene says. “We pulled down her arms; she couldn’t do it herself. She had them upwards, and she stopped breathing.”

Her father, Jesus Gutierrez, shares in the feelings of dismay. “I remember the first seizure. I think it lasted about ten minutes. The first thing that came to my mind was, Why is this happening?!

The results were almost immediate. Within two hours the seizures stopped. 

The family sought medical treatment, of course. Emili was diagnosed with two disorders. Lennox-Gastaut Syndrome (LGS) does not usually respond to pharmaceutical medications. It affects only 2 to 5 percent of children and usually persists into adulthood. This type of epilepsy causes multiple types of seizures, most notably tonic (stiffening) and atonic (drop) seizures. Intellectual development is usually delayed and/or impaired. The cause of the disorder is unknown in 1 out of 4 children.

Emili was also found to have West Syndrome, which refers to infantile spasms, a type of epilepsy with an onset of about 3 months of age, for most patients. This type of epilepsy is rare, occurring in about one in 2,500-3,000 children worldwide at any given time.

Miguel Angel Rivera is Emili’s uncle. “When she started with the seizures, she would lean back and start to get strong movements,” he remembers.

One fateful day, though, the family discovered Mexico’s Por Grace Foundation. The goal of the Foundation is to help Mexican families access health care and to educate and inform parents with sick children about CBD hemp oil and how it may dramatically improve their children’s quality of life.

The Foundation was created by a father who was in a situation similar to that of Zoe’s family. Raul Elizalde’s daughter Grace was also diagnosed with Lennox-Gastaut Syndrome. It triggered up to 400 seizures a day for little Grace. The Elizalde family was the first to be granted special permission in 2015 to legally import cannabidiol (CBD) into Mexico.

It was through the Foundation that the family learned of CBD hemp oil, and ultimately found relief for Emili’s conditions. CBD hemp oil is derived from non-psychoactive hemp oil. It contains no THC, so users do not experience the “high” associated with products derived from other types of cannabis.

Jesus recalls, “We got started with the therapy, and I noticed she stopped getting absence seizures.” The results were almost immediate. Within two hours the seizures stopped.

“I sincerely was expecting that the medication was going to take a while,” Marlene says. Looking back, she says she thought it would take at least a month to see any real changes. “But since the first day…wow!”

Both parents say that everything changed from day-one of using the CBD hemp oil.

“I never thought it would remove 100% of her seizures, that it would get her mobility back, that she would be able to sleep all night,” says Jesus, the relief palpable in his voice.

The difference in little Emili is still astounding to her family. “It’s as if they had given us a child, taken her away, and given us a new one,” says Aracelli Gutierrez, the little girl’s aunt.

Emili’s mom feels the same way. “Now, she is a different child,” Marlene says with a smile. And this 3-year old child can sit up and smile and laugh with her family as they surround her with hugs and kisses.

Now, more than three years later, the family looks forward to a life with their daughter that they never imagined would be possible. They continue to support the Por Grace Foundation and look forward to helping more families get the information and support for and access to CBD products that can help people of all ages to improve and enjoy greater health and well-being.

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