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Meet Grace, a 10-Year old with Lennox-Gastaut Syndrome

by andrea / Thursday, 05 January 2017 / Published in Featured, ECHO Families

Grace Elizalde Benavides | Epilepsy

Now ten-years old, Graciela Elizalde Benavides was diagnosed with a rare and severe form of childhood epilepsy called Lennox-Gastaut syndrome (LGS) when she was very young. Graciela, nicknamed “Grace,” was born in Monterrey, Mexico. Her epilepsy disorder causes moderate to severe cognitive impairment and at one point Grace was experiencing up to 400 seizures everyday. The doctors said they would likely persist into adulthood.

Grace’s father, Raul Elizalde and his family explored several treatment options. They took Grace to see several doctors, who would prescribe traditional drugs to control her epilepsy. Nothing worked to reduce her seizures. Feeling hopeless, Grace’s family had physicians from the Children’s Hospital of Mexico perform on Grace a callosotomy, a surgery that involves cutting three quarters of the corpus callosum from the brain. The procedure is supposed to control seizures, but Grace and her family didn’t see the results they expected. In fact, her seizures intensified.

Raul and his family wanted Grace to have a better life, and they discovered that in the United States, Canada, Spain, Uruguay and Brazil, many children that have the same disease as Grace have been treated with cannabidiol (CBD), an oil derived from cannabis sativa or Cannabis the plant, which has no psychoactive effects. In several studies over 84% of patients have seen the frequency and severity of seizures marked improve, with no negative effects, unlike the medications that had been prescribed Grace until then.

Unfortunately, all cannabis, including CBD, was illegal in Mexico.

Raul and his family were the first in Mexico to sue the federal government and win the right to import cannabidiol (CBD) hemp oil to treat Grace’s severe form of epilepsy. After trying all the other medications and treatment methods, Grace finally found relief from non-psychoactive CBD products.

Raul’s victory for his daughter created the legal precedent for other families in Mexico to gain access to CBD. Since the family’s successful court case, all families can legally import CBD hemp oil with a prescription.

Raul went on to start the non-profit Por Grace Foundation to ensure families receive the right to healthcare and access to CBD hemp oil, and to advocate for medical cannabis legalization in Mexico. Today, the organization helps patients navigate the process to access CBD in Mexico.

Grace was the first patient in Mexico to legally use CBD oil, unknowingly kick-starting the movement for CBD in Mexico.

Tagged under: CBD, Epilepsy, Lennox-Gastaut Syndrome

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