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Lorelei Ulrich isn’t like a lot of the children featured in the marijuana movement, because she’s never actually tried cannabis oil. She’s only seven and has already become one of the most public faces for medical cannabis oil in Pennsylvania. In addition to intractable epilepsy, she has autism and sensory processing issues. Sadly, her condition is deteriorating faster than the politicians in Pennsylvania are moving.
Her mother, Dana Ulrich, is working tirelessly to get Lorelei’s story out there in hopes that it will inspire politicians at the state and federal levels to finally allow Lorelei to legally try a possibly life-saving cannabis oil. It’s a labor of love that she’s been doing since August of 2013, but she’s cautiously optimistic that this year real reform will come to her state. To help speed the process, she co-founded the Campaign for Compassion, which is working to unite the people across Pennsylvania who need access to medical cannabis. Their focus is broader, and they lobby for legal medical access for people with all kinds of medical conditions. She is also lobbying and fighting for the passage of Senate Bill 3, introduced last month by Senator Mike Folmer, which would legalize medical cannabis for patients like Lorelei in Pennsylvania.
In the meantime, every day Lorelei is at risk. Her condition is so serious that Make-A-Wish sent her entire family to Disney World and Sea World in October of 2014. The trip was magical for the entire family. All of the kids, not just Lorelei, received special attention from the Disney characters and had a magical experience. Not only did Lorelei get to meet Elsa, she got a chance to get beautifully dressed up as her, too!
Since coming home, the family has redoubled its efforts to convince lawmakers to act now, rather than later. Currently Lorelei has as many as 700 seizures a day and conventional medicines simply are not doing enough. She’s been evaluated by top physicians who believe that cannabis oil could help reduce her seizures, but because of how high-profile their family has become in the battle for rational cannabis policies in Pennsylvania, there is no way for them to remain under the radar while breaking the law to medicate Lorelei. They have no option but to wait and try to influence lawmakers to move the process along as quickly as possible. Other family members help by supporting in various ways, such as making the moving video below.
Unfortunately, a lot of what Lorelei needs in term of therapy isn’t covered by the family’s insurance, so they’ve had to cut back on therapies that drastically improved Lorelei’s quality of life, like therapeutic horseback riding. They incur steep, regular expenses by keeping Lorelei on a special regimen of natural supplements, which are not covered by insurance programs. The Ulrichs dream of building Lorelei a sensory playroom where she can engage in special forms of play to help develop her sensory and motor skills and can escape from the outside world when it becomes overly stimulating. Putting money is difficult, as Dana can not work due to childcare requirements that come with caring for three children, one with a life-threatening illness. Those who are able can make a donation toward Lorelei’s therapy expenses at the family’s Gofundme page.The family most recently bought her a new pair of braces, which Lorelei likes enough to wear!
For now, the future of Lorelei’s medical options is squarely in the hands of state politicians. Dana, Lorelei’s mother, remains optimistic that this year will be the year Lorelei finally gets the medicine she so desperately needs. There is good reason for optimism, though only time will tell if this year’s medical marijuana bill will suffer the same fate as last year’s, which was gutted ultimately not passed. For Lorelei and so many like her, the longer the politicians play, the more seizures she has to suffer.
Readers can follow Legalize for Lorelei on Facebook here, and those who are able can make a donation toward Lorelei’s medical expenses at the family’s Gofundme page. The Campaign for Compassion is also on Facebook.
For previous Ladybud Magazine articles about intractable epilepsy, click here.
Photo Credit: The Legalize for Lorelei Facebook page