By Katy Rogers
While the City of Everett was one of the few voting blocks across the state that voted down the ballot questions calling for the legalization of marijuana (the measure was approved overwhelmingly statewide), there is at least one family whose prayers have been answered by the groundbreaking statewide vote.
Everett mom Jodi Kelly has been proactively advocating for the legalization of marijuana on behalf of her 4-year-old son, Joseph, since the controversial question was proposed for the ballot last year.
Joseph began having seizures at three-months-old and was diagnosed with CDKL5 a few months prior to his second birthday. CDKL5 is a rare genetic disorder that results in seizures and severe neuro-developmental impairment related to the X chromosome. Many children who suffer from this disorder cannot walk, talk, or function.
Prior to the approval of Question 4 on the Nov. 8 statewide ballot, medical marijuana became decriminalized in Massachusetts under strict regulations in 2012 that allowed legal use for those with medical needs. These regulations restricted use for minors and only allowed exceptions for children who have been diagnosed by at least two Massachusetts licensed certifying physicians. Medical Marijuana would only be permitted to children who have tried every other alternative treatment available and were expected to die within two years.
Kelly shared there is a struggle to even bring the topic up with doctors, as, “Doctors do not even want to talk about it, let along suggest it, because it was still a Schedule 1 drug – meaning it technically has no medical value.”
Since Joseph did not meet all of these qualifications, his physicians ruled out medical marijuana and were leery of prescribing him the controversial drug to begin with. As a result, by the age of three, Joseph was already on 10 different medications, and doctors were suggesting an additional one. The new medication they were suggesting is known to cause vision problems, including blindness in children.
Kelly said that in addition to him continuing to suffer from seizures while on all of these medications, her son was now in a “zombie-like” state, completely unresponsive.
“My child was no longer my child,” she said. “He could no longer do anything he did before. Eating, drinking, walking, or smiling; he was just existing.”
That is when Kelly put her foot down and proceeded to research medical marijuana online, finding that families who administered Cannabis oil to their children with CDKL5 witnessed remarkable progress without the horrid side effects of the other suggested medications.
Kelly shared that she administered Joseph his first dose of cannabis oil in the summer of 2015.
“It was like a film was lifted from his eyes,” she said. “He started gaining back all of what he had lost. He started coming to life in ways I had only prayed about. Everyone took notice. His family, his teachers, and even his doctors. But again, they still could not support it because they have no actual proof from studies of their own.”
Since the rules were so tight on medical marijuana, it had been difficult for Kelly to obtain it for her son. She has imported Haleigh’s Hope from Colorado, but shared that many families cannot afford to do this and resort to the black market, going to illegal drug dealers to obtain the substance.
On the streets there is no way to completely regulate what they are getting.
“Because it isn’t readily available, many parents are so desperate to save their kids, they often get robbed or are given ‘snake oil,’ which consists of ‘who knows what’ because there are no regulations,” she said.
Joseph has continued to take his dosage via his G-tube, and has shown significant improvement, Kelly said. Joseph now eats, drinks, climbs stairs, and is even beginning to say a few words, something Kelly never imagined she would see her son do.
Days before the election, Everett Police took a different stance, urging voters to vote No on 4. Chief Steve Mazzie issued a statement via Facebook stressing the negative impact marijuana will have on communities like Everett.
“In all the years I have been working around these issues, the problem with marijuana has been that people do not see the negative consequences until much later after something bad happens,” he wrote.
Everett was one of the few cities where the majority of voters (51%) voted ‘No’ on legalization. Statewide, the Question 4 passed easily.
Kelly understands that the issue is a controversial one, but hopes people have an open mind as it proceeds to become legal throughout the Commonwealth.
“Joseph’s story forces people to look at it from a different point of view,” she said.