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There is no cure. The disease can be fatal, and the treatments that exist have "horrible" side effects that only add to Isaac’s developmental harms, said Sintz.
"We have nothing to lose," said the South Jordan mother of four.
Isaac was born healthy and developed normally until his first febrile seizure at 6 months of age, which Sintz said doctors initially believed was triggered by an immunization.
"We stopped doing immunizations and he stopped having seizures, but when he turned 3 he started having seizures every day and had to be hospitalized," Sintz said. "He wouldn’t eat or go potty or anything and had to get a feeding tube. At that point, they told us he might never walk or talk again."
Genetic tests confirmed Dravet Syndrome.
The Sintzes flew to Miami to meet with Dravet specialists. They tried everything — special diets, alternative therapies and toxic psychoactive drugs.
He uses Clonazepam, a benzodiazepine, to stop his seizures and another drug that helps keep them at bay.
"He can walk and carry on a conversation, but functions on the level of a 3-year-old," said Sintz.
But the drugs are ruining his kidneys and adding to a heart condition he has developed. "Our fear is he is going to die of a seizure or organ failure," she said.
Meanwhile, Issac’s mental capacity deteriorates by the day.
Sintz has contemplated taking Isaac and her two youngest children to Colorado, but it would mean leaving the team of doctors who monitor her son and her family support network.
"My sister lives just up the road and helps out. We live in crisis mode and she keeps us functioning," she said. "My only choice is to go to Colorado and bring the herb here. But I can’t take the risk of getting caught doing something judged illegal. I can’t jeopardize my family."
There is a waiting list for Alepsia.
But Maughan said if Utahns are granted access, "My understanding that the plants will then be grown specifically for our children."
Said Froerer, "This herb has no social disadvantages since it is not and can not be used to get high. I see nothing but positive social and medical benefits if this will work."
Tribune reporter Kristen Moulton contributed to this story.
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