Issue link: https://www.e-digitaleditions.com/i/1482660
19 adovcate focus cannapatientcare.com october 2022 | cannabis patient care to be near impossible for any child in Delaware to get a med- ical card. Thankfully, the 2% of doctors that are not employed by Nemours stepped it up and pretty much came to the res- cue of all the children in Delaware." "Governor Markell saw that it was important for me and so many other children in the state," Rylie added. "One of the things that we've learned when people are passing legisla- tion is that when a large company like that steps in to give their support, you do not rely on them." They also learned that while enacting laws are crucial, more support is needed to ensure medical cannabis actually reaches the children who need it. The Importance of Sharing Other Pediatric Patient Stories Through their work, stories of others' experiences with trying to use medical cannabis as a pediatric treatment came forward. Even though medical cannabis is legal in several states, families still encountered resistance to its use in hospital settings and from trying it as a last resort. Families of children undergoing treatment reach out to Rylie and Janie through Rylie's Smile Foundation to share their stories and ask for help. "There was one family visiting from New Jersey," Janie recalled. "Their child went into seizures in the emergency room of Nemours. So, the mother immediately used a nose spray and was able to stop the seizure. And the whole staff was like, 'wow.' But the doctor called Child Protective Services [CPS] on the family. We got involved and we contacted an attorney that would represent the family." In addition to having their child in the hospital, the family now had to deal with the fallout of being reported to CPS for cannabis use, though the CPS agent sent to monitor the family in the hospital was understanding. "The family said that CPS even thought it was crazy. They are totally fine with it in our state. It's just the hospi- tal policy that it could not be on the premises," Janie added. Some stories highlight the tragic consequences of with- holding treatment opportunities for children with severe con- ditions. Janie also shared the experience of a friend and par- ent. "Her child was severely autistic, but he also had epilepsy," Janie recalls. "I remember he was in the ICU and he had been in status epileptic seizures and was pretty much in a coma. The parents had ordered Charlotte's Web, and the father was going to bring it into the ICU, he had it in his pocket. The hos- pital told him that if he stepped foot in there with the Char- lotte's Web, they would call security. And the child died. The parents never got a chance to even try it, and it haunts the mom to this day that they were so close. They were within feet of him with this oil in their hand and they couldn't even try it. Even though the outcome may have been the same, I wish that the education would get to those advisors and that medical staff to just ease up a little bit. Especially when a child is in such desperate need," Janie said. In another story, one that Rylie speaks about in her pres- entations, an infant was sent home from the hospital with hospice and given two weeks to live due to a severe Mitochon- drial Disease. Several people, including a senator who helped with Rylie's Law, advocated for the infant to be legally recom- mended medical cannabis as soon as possible, Janie explained. "They asked the hospital, 'Could you get this baby on medical cannabis because nothing's going to help her?' Why not? She's dying," Janie stated. "The parents called me crying, saying that they didn't know what to do because the doctor told them it Rylie present day, cancer free. Rylie on her farm.