UPDATE: Zander Welton passed away in September 2015.
My five-year-old son Zander has had two brain surgeries. During each, doctors removed portions of his brain. The second surgery had a long recovery time because of the muscle loss that he suffered after being bedridden for weeks. It caused an infection that caused him to be on IV antibiotics at home. It took months before he could walk again.
Our hope was that these surgeries would stop the violent seizures my son has suffered from since he was nine months old – seizures so intense that Zander would sometimes stop breathing. These seizures have also severely slowed his development.
These surgeries didn't help. Neither did the many strong pharmaceutical drugs we tried which did little to help and often had harmful side effects. For years, my husband and I watched our tiny son bravely try treatment after treatment to try to ease the pain and danger of his severe epilepsy. And we have seen these treatments fail.
But recently, Zander is walking backwards for the first time. He lights up when he sees us laugh and responds with laughter of his own. He held a fork for the first time. He's sleeping through the night, and his seizures have all but stopped.
After all the invasive surgeries and harsh pharmaceuticals, the thing that finally helped my son is medical marijuana, both an extract in the form of an oil and dried plant material. But his progress and his greatly improved quality of life are now being threatened. Some law enforcement officials in Arizona, where we live, have indicated that they believe that the Arizona Medical Marijuana Act does not allow patients like Zander to use marijuana extracts and they can be criminally prosecuted.
This doesn't make sense. Certainly when Arizona's voters said yes to legalizing medical marijuana in 2010, they intended for sick people like my son to have access to this medication in forms like extracts, which are easier to ingest and can be more accurately dosed than simple plant material.
My husband and I did not make the decision to give our son medical marijuana lightly. We watched Dr. Sanjay Gupta's documentary "Weed" and we were inspired by the story about a young girl in Colorado whose violent seizures were finally controlled, after years, by medical marijuana.
We consulted with Zander's neurologist, who told us that the only traditional medical option left for Zander is a third brain surgery that could leave him paralyzed or in a vegetative state. And we talked with a family friend who is a bishop in the Mormon Church, to which we belong, who told us that the church would approve of us giving Zander marijuana for medical purposes. As a mother who has tried everything to ease her son's pain, I was ready to take their suggestions.
We decided to apply for a medical marijuana patient ID card through the Arizona Department of Health Services. The Department approved Zander's application and sent us a state-issued patient ID card.
We consulted with medical marijuana experts and we did our research. We learned that the best way to give Zander the most precise and effective dosage, while also making it easiest for him to take the medicine, was to give him marijuana extract, in the form of an oil, along with dried plant material. Zander started actively trying to play with his brothers. He had greater focus at kindergarten and he was able to stack more than two blocks at a time. My son was no longer being woken up several times a night by dangerous and scary seizures.
But, faced with the threat of criminal prosecution, my husband and I made the heartbreaking decision to stop giving Zander the medical marijuana oil. Because we want to be able to give our son the best medicine available to him, the ACLU and ACLU of Arizona have filed a lawsuit for us that asks the court to clarify that the Arizona Medical Marijuana Act allows seriously ill patients to use medicines, like extracts, that are derived from marijuana. Zander can benefit more from extracts than he can from plant material alone. We also want the court to bar law enforcement officials from taking any adverse action against us for treating our son with a medical marijuana extract. When the voters in my state approved medical marijuana in 2010, do you think they wanted me to be criminally prosecuted for giving my son the form of marijuana that is most helpful to him?
Please visit www.aclu.org/Zander to learn more about our son's case and find out how you can help him get the medicine he needs.