Batten Patient Inspires Utah Legislation Named in Her Honor

May 9, 2014

For Catrina and Jeff Nelson, losing their 6-year-old daughter, Charlee, on March 15th to late infantile Batten disease has been like a bad dream.

In the midst of their grief, the family stood in the private office of Utah Governor Gary Herbert. The next day as Herbert signed “Charlee’s Law,” in a quiet ceremony. Also known as HB 105, Charlee’s Law will allow those with intractable epilepsy to first acquire written permission from a neurologist and then apply for a waiver to import cannabis oil. The Utah Legislature formally passed the bill March 13 after Charlee and her parents arrived on the floor of the House and Senate to witness the vote.

According to Catrina and Jeff, Charlee held on until the legislation was passed after many weeks of severely declining health and complications. After battling mononucleosis in October and surgery for a feeding tube, their daughter’s strength slowly diminished. A period in the hospital ended on March 4 when her parents brought Charlee home to hospice care.

She had declined by the time hearings were starting on the bill, but as one of 50 children on a waiting list in Utah to have access to nonintoxicating cannabis oil for seizure control, Charlee became the symbol for compassionate use as parents of children with severe epilepsy conditions lobbied the Utah House and Senate.

“We were very surprised when the legislators called and offered to name the bill for her,” Catrina said. “We did not expect it. What better way to honor her after she’s gone.”

“We were contacted right before the vote was scheduled and asked to attend, so we took her to the statehouse,” Catrina recalled. “As sick as she was, she had real energy and was happy when she was on the floor waiting for the vote. There was a standing ovation in the Senate and it was like she knew that was for her. She held on to do this.”

The Nelsons never set out to be active lobbyists for the legislation, but became involved through their association with the local Epilepsy Society. The Nelsons spent years before Charlee’s NCL2 diagnosis dealing with their daughter’s debilitating seizures that started when she was three. “We were desperate to find some solution before we knew what her diagnosis was,” Catrina said. While they know that the law would not have saved their daughter’s life, the potential to extend it with a better quality and less suffering would have been some comfort, they noted.

That she leaves behind a symbolic legacy is a tribute to their daughter’s ability to inspire so many people, Catrina said. The little girl who loved to dance, and sing Twinkle, Twinkle Little Star was able to put a face on what it really meant to need a medical miracle, her mother said, which was her greatest gift for so many others facing severe seizure-inducing conditions.

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