By next week, a Mesa family hopes to be giving their 5-year-old son a drug treatment that’s controversial even for adults.
They plan to use medical marijuana to treat their son’s seizures caused by cortical dysplasia, a genetic brain defect.
Jennifer and Jacob Welton have three little boys. When their second son Zander was nine months old, he had his first seizure. Now five, Zander continues to have seizures weekly.
His parents say some are only noticeable in his eyes when they start to twitch. Others are more severe. His body stiffens and Zander stops breathing sometimes causing him to turn blue. In that case, Zander's parents worry each seizure could be his last.
The cortical dysplasia, coupled with autism, keeps Zander from any real form of communication. He squeals and grunts, and on occasion will bring his parents a cup to indicate he’s thirsty, but otherwise they say he doesn’t use hand gestures or form words.
"If he's sick we have no way of knowing," said Jennifer.
His mobility is also hindered. He's able to walk only a few steps at a time and often reverts back to crawling after a bad seizure.
Zander has undergone two brain surgeries, a third surgery for shock therapy and has been administered a series of trial and error prescription drugs. His latest prescription made minor improvements with his seizures, but Jennifer says the medication made her son more combative.
After watching news reports on families with disabled kids who are thriving thanks to medical marijuana, Jennifer and Jacob say they started the process of making Zander a legal card holder.
In Arizona there are three key requirements for a patient under 18 years old to be prescribed pot legally.
They need two doctors to sign off on the treatment, the caregiver needs to be approved for a medical marijuana caregiver's card and that person has to live with the recipient.
The couple connected with a naturopathic doctor and started the process to administer legal pot, learning Tuesday that their applications have been approved.
Zander will be medicated with CBD oil drops and his parents will use a syringe to pinpoint the exact dosage that works.
The biggest hitch the couple faces is medical marijuana is not covered by insurance.
Currently, the state picks up the $5,000 a month tab for Zander's prescriptions. The CBD oil will cost about $300 a week out-of-pocket. The couple has been reaching out to friends and family on Facebook for help with donations.
Jennifer’s immediate hope is that the seizures stop, but says her dream would be to have Zander well enough to walk, run and interact like any other little boy.
“If this finally works for Zander and I finally get to meet who he is, that would be amazing. Because I don't know who he is, he's just a little boy that's trapped in this craziness.”