Valkyrie and Mitch Schmidt feel like they’ve run out of options while trying to save their daughter’s life, except for one: move to Colorado.
Their three-year-old daughter, Emelyse, has suffered through a vast array of serious medical conditions: intrauterine growth restriction, brain bleeding, hydrocephalus (treated with multiple brain surgeries called VP shunting) bronchopulmonary dysplasia (or BPD) and two seizure conditions: epileptic encephalopathy and Lennox-Gastaut Syndrome or LGS -- a severe form of epilepsy.
Last month, Emeylse stopped breathing after a tonsillectomy before doctors revived her and discovered that her seizure medication had severely damaged her pancreas.
Valkyrie and Mitch were told to put their daughter in hospice. But they had another idea.
"I want to make her time with us the best possible and cannabis oil will give us that chance,” said Valkyrie Schmidt, Emelyse’s mom.
The Schmidt family's primary neurologist said daughter Emeylse, age 3, might be a good candidate for cannabis oil treatment--a form of medical marijuana that has reportedly helped patients with seizure disorders.
In one, last, desperate move, the family is going out to Colorado next week and hopes to be moved to their new state by the first week of March.
"It's infuriating that we should have to move in the first place. We have to uproot, become essentially refugees in our own country to try and save our baby’s life,” said Valkyrie Schmidt. "If we got the oil here illegally, we would go to jail and she would die somewhere else."
Quality of life
There’s no cure for Emelyse’s condition, and it’s hard to know how long she could live. Still, her parents are desperate to ensure they can provide the best quality of life for their daughter while she is alive.
The move won’t be cheap. But several people, including strangers, have already offered to lend a helping hand.
There is currently a GoFundMe page set up to help cover the expenses of the family's Colorado move. Mitch Schmidt already has a job lined up as well.
"I hope that Kansas is able to move forward and be more progressive about this because we're not the only family going through this,” said Valkyrie.
SB-147 is a bill that has passed the Kansas House of Representatives and would authorize hemp treatments for seizure disorders. It is currently under review in a senate committee.
The Schmidts are not the first area family to consider moving to Colorado. In 2014, 41 Action News reported on the Reed family, who moved there in May 2014 to start treatment for their 3-year-old son who suffers from about 100 seizures per day.
"We've tried everything and there was never any sort of reduction in seizures," Kathy Reed said.
Holli Brown and her 10-year-old daughter Sydni Yunek of Gladstone, Mo. also moved to Colorado.
"Sydni missed out on over half of her childhood having seizures. She used to have 125 seizures an hour which is around 3,000 a day," Brown said.
Among the medical draws is “Charlotte’s Web,” a special strain of marijuana that is used to treat children with epilepsy. It is given to patients in the form of oil and studies have shown the cannabinoid or CBD levels can have a calming effect on the brain.
5 things about cannabis oil
- Cannabis has been used for medicinal purposes for thousands of years.
- By federal law, the possession of Cannabis is illegal in the United States, except within approved research settings; however, a growing number of states, territories, and the District of Columbia have enacted laws to legalize its medical use.
- The U.S. Food and Drug Administration has not approved Cannabis as a treatment for cancer or any other medical condition.
- Chemical components of Cannabis, called cannabinoids, activate specific receptors throughout the body to produce pharmacologic effects, particularly in the central nervous system and the immune system.
- Cannabinoids may have benefits in the treatment of cancer-related side effects.