HOLLADAY, Utah – One year after 6-year-old Charlee Nelson passed away: family, friends and supporters came together at the cemetery where she is buried to celebrate her life and the influence the law bearing her name has had on Utah families dealing with a variety of rare illnesses.
Charlee passed away March 15, 2014 after a struggle with Batten Disease, which is a condition that meant she sometimes suffered hundreds of seizures in a single day. Her family was among those in Utah who sought treatment for seizures using cannabidiol oil, or CBD, but Charlee died before the law giving Utahns access to the treatment took effect.
Gov. Gary Herbert signed “Charlee’s Law” Just six days after her death, and the law took effect last summer. Sunday, supporters released purple balloons into the sky to honor Charlee and celebrate her life.
Charlee’s mom, Catrina, said her daughter loved the color purple.
“Her favorite color was purple,” she said. “It was actually the only color that she could ever say. But when we would show her a purple or a pink or anything, anything at all: she would always pick the purple and so purple just became her color.”
The ceremony was held at Holladay Memorial Park, 4900 Memory Lane, Sunday afternoon. Catrina Nelson said the event was a chance to bring people together to celebrate Charlee and the influence her story has had.
“We’re coming to celebrate Charlee’s life, we are, it’s one year today that we lost her, and at first it was going to be a just a little, private event, and then we didn’t really feel like we should be alone today so our family and friends kind of put this together for us,” she said.
Gina Szajnuk was among those who came to release purple balloons and celebrate Charlee, and she said her family has members who suffer from a rare disease—which makes them feel a special bond with the Nelsons and others who face similar struggles. She came with the group Charlee's Angels.
“They are just the most amazing family, and Charlee was an amazing little girl, I didn’t personally even know her, but she really impacted Eva--Eva’s going to sing today a little song she wrote for Charlee, to honor her,” she said.
Those who live in Utah who want access to the strain of medical cannabis allowed under Charlee’s law still face a web of complications due to federal laws that prohibit moving marijuana across state lines, but some families have found success with treating their children with CBD, which is derived from a strain of cannabis that has extremely low quantities of THC, which is the compound in marijuana that gets people high, but is high in the compounds that show promise in treating illness.
Catrina Nelson said they take comfort in knowing that the law bearing their daughter’s name is making an impact for people in need.
“I want to say thank you to the state of Utah and all those who fought and were supportive of [Charlee’s Law],” she said. “We were just in a meeting a couple weeks ago where we heard stories of how Charlee’s Law is effecting the lives of many children here in Utah, and it helps us as her parents who can’t have her, and who, she never benefited from it, to know that it is helping other children and other people and it’s giving them a quality of life and hope, and that’s exactly what we need, as families that are suffering from this.”
Charlee’s father, Jeff Nelson, also spoke, expressing his gratitude for the support his family has received.
“We’re just so grateful as a family to have this opportunity to celebrate Charlee’s life,” he said. “She touched a lot of hearts, and we just want to help her be remembered on this day that she passed away one year ago and let everyone know that we’re grateful they continually think of her and try and support us through this difficult time.”
The CBD made available by Charlee’s Law has shown promise for some patients, but a limited supply and a long waiting list mean not everyone who wants to try the treatment is able to do so. Potential patients in Utah face issues because it is illegal to transport CBD across state lines due to federal regulations regarding marijuana--which is a situation advocates are working to change.
Under Charlee’s Law, families can secure a permit from the Utah Department of health for the CBD, which they can take to an out of state producer. As of February, about 50 families in Utah had such permits. At least one Utah family who spoke with FOX 13 has relocated to Colorado in order to avoid the legal issues that stem from getting the CBD from out of state.
