Episode 3 of 7
Tune in tomorrow to hear more from the Jergers
The Jerger’s story is unfathomable. Not only because their youngest daughter, Jaelah, was recently diagnosed with Doose syndrome (a rare form of catastrophic pediatric epilepsy), but because they were at risk of losing her to the state of Indiana.
Charlotte’s Web CBD oil was shipped to their home in Indiana like thousands of other families across the country and it was helping to control Jaelah’s seizures.
Although Lelah, Jaelah’s mother, said they would not consider trying cannabinoid therapies, they are now very happy they did because her almost 100 seizures daily have been reduced to 10-20 seizures per day after receiving education services by Care Specialists at the Realm of Caring. Just when things started going well the worst happened. The family received a call from Child Protective Services (CPS). According to them, “We were medically neglecting our child by using CBD oil instead of a pharmaceutical, which is a false allegation,” says Jaelah’s father, Jade.
A nurse practitioner at Riley’s Hospital contacted CPS because “We were using Charlotte’s Web CBD oil even though Jaelah was seizure free [at the time], they [medical staff] didn’t agree with it,” says Lelah. The Jergers received a second opinion and that doctor wanted Jaelah to try a low-dose of Keppra in addition to the CBD oil, so they reluctantly agreed to try it to avoid CPS involvement but they continued to wrongly investigate.
It wasn’t long after she started Keppra that she began having unwanted side effects and her parents decided to wean her off. Unfortunately, this meant they weren’t compliant with CPS. Fearing that their daughter would be taken away, the Jergers decided to make the move to Colorado where the medical community is more accepting and educated on cannabinoid therapies.
They didn’t know anyone in Colorado. Where would they live? Where would they work? They have four other children who would have to leave their friends and schools. It didn’t matter – they were moving. Fortunately for them, they qualified for the Joy Fund which is a relocation grant awarded to families in need. The Jergers used the grant to make their transition much easier. Jaelah is currently having minimal seizures, but she remains 90% + controlled and they continue to search for the right combination of cannabinoids.
You’ll hear more about this in the next episode, but in the meantime please consider making a donation to the Joy Fund by being a RoC Friend.