The mother of the child that Mississippi's Harper Grace's Law is named after has started a GoFundMe account to raise $6,000 to move the family to Colorado so her daughter will be able to freely get cannabis oil to treat her rare form of epilepsy.

“This move is all I know to do at this point,” said Harper Grace’s mother, Ashley Peszynski Durval, in a Facebook post. “I want Harper to be able to play outside without us having her to come in every four minutes to rest. With all of that said, this move is going to take a lot of money. We are saving every dime we can. And I ask all of you to help us on this huge leap of faith.”

The GoFundMe account shows $1,375 has been raised to date.

Durval has voiced frustration with the time it is taking to have the cannabis oil made available for trials to treat children in Mississippi since the Harper Grace Law took effect in 2014.

Harper Grace has waited three years to be able to possibly get the cannabis oil to treat her Dravet syndrome, a rare form of epilepsy, but the clinical trials will be limited to a handful of children.

The use of cannabis oil is legal in Colorado.

In 2014, the Mississippi Legislature passed Harper Grace's Law, signed by Gov. Phil Bryant, named after the then 2-year-old. It removed cannabis extract oil from the state's illegal drugs list.

The state has yet to receive final federal approval for clinical trials to begin.

Dr. Brad Ingram, director of the Pediatric Comprehensive Epilepsy Center at the University of Mississippi Medical Center, said in January that the hospital would submit a 32-page proposal to the U.S. Food and Drug Administration to allow the oil for treatment of five to 10 of the sickest children.

In March, Ingram said UMMC has a list of 25-30 patients interested in treatment with the initial research protocol aimed at five to 10 patients.

"Patients selected for the study have not and will not be determined until we are at the appropriate stage of the clinical research," he said. "But when patient selection is first decided, it will be based on our well-defined research protocol. As our applications to the FDA/DEA are focused on a compassionate care usage, we used typical enrollment criteria for pediatric pharmacology epilepsy studies."

Ingram said cannabis oil has never been administered to children in this way, so the study protocol "is thorough and balances patient safety and brain development with possible efficacy in the treatment of severe epilepsy. This, of course, also must be balanced against the total amount of product that we will initially have access to. None of us want to put someone on a drug that makes them better, only to run out a few months later."

Once the initial compassionate use process is completed and researchers determine its effectiveness and side effects, Ingram said, he hopes the study can be expanded to include other children with varied severity levels of epilepsy.



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