Utah family says its goodbyes while praying for legislation to get cannabis oil to seizure-stricken kids.
No longer needed, an oxygen tank sits idle on the living room floor. Nearby is a box of purple bracelets that Charlee Nelson’s family made to raise awareness of Batten Disease and to collect donations to cover the 6-year-old’s medical costs.
Across the room, hanging from the stroller Catrina and Jeff Nelson had to buy for their once active, gregarious child is a burial dress.
“My [oldest] daughter was recently baptized and we were shopping for her when I saw this and thought, ‘This is the dress we have to get [for Charlee]. It’s the wedding dress she’ll never get to wear,’ ” Catrina said, fingering the white, satin gown.
Three years ago Charlee Nelson was singing the ABCs and waving to strangers on grocery store outings with her mom. Family movies show her fearlessly plunging into the swimming pool, dancing with her older brother and sister and making silly faces for the camera.
Today she is blind, bedridden and near death.
“She’s hanging on, but she’s not doing too well,” Catrina says, cradling her nearly lifeless “baby” girl on the living room couch.
Charlee is among 50 Utah children on a waiting list for a nonintoxicating cannabis oil shown to quell seizures in children with untreatable epilepsy. Utah lawmakers are debating a bill, HB105, that would allow families to import the oil from Colorado where marijuana is legal and the “hemp supplement” is produced.
Charlee has Batten disease, a rare neurological disorder occurring in fewer than four of 100,000 births in the United States.
She lacks an enzyme needed to remove fatty waste from the cells of her brain, eyes, skin and muscles. The accumulating waste leads to seizures, mental impairment, blindness, loss of bodily control and eventually death — a fate cannabis oil can’t change.
There is no cure, said Catrina, who nevertheless wonders whether the oil might have kept the brain-damaging seizures at bay, prolonging and improving her daughter’s quality of life. “We lost a lot of time diagnosing and treating her atonic seizures. Time is what it might have bought us. That’s what it kind of boils down to, time.”