Lindsay Rose Sledge is a military wife and mother to three young daughters, but she’s not one for public speaking or advocacy. “I’m not well-spoken,” she told me last week, “but after what happened to my daughter Paloma, I made the decision that I’d do anything to save her life.” Paloma is going to be three years old in June. She is the youngest of Lindsay’s daughters, and she was diagnosed with a rare syndrome called Dravet, characterized by difficult to control, prolonged and life-threatening seizures. It was one such recent seizure that propelled the reluctant mother into the offices of her state representatives and then as a speaker in a recent Utah state legislature committee meeting. A couple of months ago, little Paloma had another prolonged seizure that required intubation and massive doses of powerful narcotics to stop it.
Now desperate, Lindsay knew that she had to do something to change the situation. The family had been using Charlotte’s Web Hemp Oil for some time, and despite cognitive gains, it wasn’t helping the big seizures. Lindsay felt strongly that Paloma needed a slightly higher THC component, but it’s illegal in Utah. Other children with Dravet are using combinations of high CBD products and THC or THCa to achieve sometimes almost miraculous seizure control. “I thought I was going to quietly do what I needed to do for my kid, and I had no desire to speak out or go to the legislature to fight for her.” During the last couple of months, though, she really started noticing what the legislators were saying and was sickened by how the politics were being played out.
Lindsay is originally from Texas, and her husband grew up in Hawaii. They’ve been a military family for fifteen years. Their three girls are eleven, six and two years old. Living in Virginia when Paloma was diagnosed with Dravet, they soon learned about cannabis when they read about Charlotte of Charlotte’s Web fame. Charlotte Figi also has Dravet Syndrome and had a dramatic turnaround when she began taking cannabis medicine in Colorado. “Reading about Charlotte was the only positive thing we heard when Paloma was diagnosed,” Lindsay remembers. The family asked the military to move them to Colorado, but they denied the request and moved them to Utah instead. Encouraged by a recent movement by Mormon mothers to pass a high CBD bill, Lindsay and her husband accepted the assignment in hopes they’d be able to finally give Paloma cannabis oil. They moved there and immediately found a doctor to sign off for $200 to get them a hemp card. They asked where they could get the oil and were told that they couldn’t, that they would have to break the law to get it. Not willing to jeopardize their family, they waited until it became legal to ship Charlotte’s Web Hemp Oil out of Colorado and finally were able to try it. The CWHO did not significantly help their little girl’s seizures, but her cognition and overall well-being improved.
Meanwhile, a battle was brewing in the Utah state legislature between two senators and two bills. The first bill, SB73, had been carefully nurtured by Libertarian-leaning Republican Senator Madsen who himself had sought relief in medical cannabis for chronic back pain in Colorado. He had the full support of many families of sick children and patients. SB73 expanded the existing bill, created three years before by the group of Mormon mothers, and added more allowed uses raising the legal limit of THC allowed in the medicine. Republican Senator Vickers, a pharmacist by trade, crafted SB89 in response. He had no patient or family supporters. Lindsay and other supporters of SB73 believe that Senator Vickers created SB89 specifically to sabotage SB73. She pointed out that over 60% of the Utah populace wants medical marijuana, and that Vickers’ bill is a nod to that but with so many restrictions that it’s rendered virtually useless. When the Mormon Church spoke out against the Madsen bill as well, it was basically dead. Lindsay is not Mormon and pointed out that most of the people in the legislature are Mormon and will not go against their church. They fear “unintended consequences.”
Nonetheless, Lindsay was galvanized to go to the legislature and fight for the life of her daughter. “I’m an emotional mom, not a public speaker,” she said, “but I don’t want my kid to die.” On Wednesday, she showed up with two of her three children at the committee hearing where both bills were presented. The first bill presented was SB89, and the legislators spent 2 hours on it, going through everything. No families or patients spoke. When it was time for Madsen’s SB73, it was lunchtime. The legislators were tired and restless, and Lindsay had been chasing her own two children in and out of the room. At one point, as she tried to distract her daughter in the hallway outside of the room, she overheard several committee members mocking Senator Madsen, and her heart sank. When her name was called to go into the room and speak, she grabbed her girls and went inside. “I was nervous as hell,” she said, “but I told them to please pass the bill. I told them that if they didn’t pass it, I would not only have to move my family, but our fifteen years of military service would be sabotaged as well. Otherwise, our girl Paloma could die.” Lindsay demanded that everyone look at her child. She reminded her own congresswoman that she had visited her and asked for her support. Lindsay said that no one even looked at her. SB73 didn’t even make it out of committee.
Lindsay and her family had moved to Utah hoping to spend the rest of her husband’s military career there. They bought a house, are invested in the community and love the life, other than what they believe to be a corrupt government. “If we didn’t have a house, it’d be a no-brainer,” she said. “We’d be on our way to Washington or Oregon. My husband is putting in for jobs everywhere in that area, but it all depends on that. I will do whatever I can to save Paloma’s life, but I don’t want to live my life having to look over my shoulder trying to save it, in fear that they’ll take her away.”
This is a real story of a family that is doing what they are supposed to do. They are taking care of their child with a terrible seizure disorder, dealing day to day with events that tax them in every conceivable way. They are just one of thousands of similar families who find themselves caught in the middle of a political debate that has no rhyme or reason but rather favors those who randomly live in certain states with certain laws that enable them to get medicine to help their sick children. The rest are called upon to literally beg for help from their elected representatives. On top of dealing with the extremely stressful and sometimes traumatic experience of caring for a child with epilepsy is added the weight of begging legislators to look beyond religion, special interests and cultural biases, often to no avail. Lindsay recalled the visit she’d made earlier to her own representative, Ann Milner, before the committee hearing when she’d asked her to vote for Senator Madsen’s bill. Milner looked her in the eye and said that a sheriff had visited her every single day, claiming that he didn’t want stoned drivers on the road. Lindsay insisted that her child was barely three and needed the medicine, maybe even to live. “I’m leaning more towards the conservative bill. We want to do this slowly,” Milner said. Lindsay realized that trying to explain that the bill wouldn’t help her child or hundreds of other children was useless, that minds were made up. “She listened to the sheriff instead of me,” Lindsay said. “She voted against it.”
Writer Update: By the Utah Legislature’s last night in session on Thursday, March 17, even SB89 died without debate or a house vote. Proponents of medical marijuana have already begun working on putting an initiative on the ballot for a wider medical cannabis bill, but it probably won’t be until 2018. The community of children with seizure disorders is vast yet connected in intricate ways that defy religion, belief, race and socioeconomic divisions. The strength and doggedness it takes to get up every day and fight, not only for your own child’s life and quality of life, but also for the people you’ve met along the way, is difficult to articulate. Intense bonds are often formed as those of us in this community follow one another’s children, their ups and downs, struggles and joys. Lindsay notes that four children we both know with Dravet have died this month, already.