Utah Mom with Rare, Painful Disease Advocates Marijuana Legalization: 'Any Politician Who Has a Heart Should Get Behind This Effort'

While her two young daughters were shopping with their father in South Weber, Utah, last Oct. 1, Enedina Stanger stayed behind in the parking lot. She had tried everything to help ease the pain from Ehlers-Danlos syndrome – the rare and potentially fatal genetic tissue disorder she suffers from – but nothing else worked. She lit up a marijuana cigarette.

After she was finished, she rolled down the window of her van to let out the smoke. That’s when somebody passing by called the police, claiming Enedina was smoking in front of her daughters, who by then had returned to the parking lot with their father, Mike Stanger.

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Enedina, 27, was booked and released from the Weber County Jail and charged with third-degree felony child endangerment and misdemeanor possession of a controlled substance. Although the felony was later dropped and a judge ordered probation instead of jail time, the incident has thrown the Utah homemaker’s life into turmoil in the past three months.

Because her probation prohibits drug use around minors, Enedina and her husband recently moved with their girls to Colorado, where marijuana is legal, rather than risk possible arrest – and losing custody of Elena, 4, and Eva, 3.

“All of our family and friends are in Utah – it was hard to leave them,” Enedina tells PEOPLE. “But I couldn’t take the risk of going to jail and losing my kids. Especially since they’ve now been diagnosed with EDS, too.”

Elena and Eva have already dislocated their ankles and wrists several times – one of the early symptoms of the illness that leads to overly-flexible joints and fragile skin.

Now Enedina is leading a fight to make medical cannabis use legal in Utah so that her family can move back home and others who rely on marijuana to ease their pain can use it freely.

This Wednesday, she and her husband will appear at a press conference in Salt Lake City with Republican state representative Mark Madsen, who is sponsoring a bill that would legalize whole plant marijuana for patients in need.

“Although my bill will only affect two percent of the Utah population, I still feel that those people should no longer be arrested and prosecuted because cannabis gives them the relief that modern medicine cannot,” Madsen, who lives in Saratoga Springs, Utah, tells PEOPLE.

The Stangers and others who rely on medical marijuana shouldn’t have to flee to Colorado, Arizona, Nevada and New Mexico, Madsen says. “It is unjust and unfair,” he says. “What Enedina and the Stanger family are suffering at the hands of Utah State governmental entities is exactly what my bill will end.”

Husband: Everyone in Family’s Mormon Church Supportive

Edina was diagnosed with the debilitating syndrome when she began suffering dizziness two months after her first child was born. Two years later, her pain became severe enough that husband Mike went to several known drug dealer hangouts in Salt Lake City to purchase marijuana for his wife after learning that others had successfully used it to treat similar ailments.

“I had to sneak around and go to some pretty shady places about once or twice a month to get it,” he tells PEOPLE. “It helps Enedina to relax enough that she doesn’t have as many muscle spasms and is able to avoid the pain to begin with. Nothing else she’s tried has worked except this.”

Although the Stangers are members of the Mormon faith and their religion forbids smoking and illegal drug use, “everyone in our congregation was supportive because they knew she was using it for medicine, not to get high,” says Mike. “Enedina is using this for the purpose God intended.”

‘I Truly Believe Marijuana Saved My Life’

It was a relative of a close friend, though, who called the police and reported that Enedina was smoking pot in front of her children.

“It was horrible – cop cars surrounded us and I had to try and explain my medical condition to the police,” she tells PEOPLE. “I wasn’t smoking in front of the girls, but the smell had lingered. I was shocked when I found out it was somebody I knew who had reported me. It was the worst day of my life.”

Even though the child endangerment charge and $1,000 fine was dropped, Enedina still had to complete a parenting course as part of her probation.

She and Mike then decided to move to Fruita, Colorado, a four-hour drive from their hometown of South Weber, to ensure that there were no further legal problems from buying or using marijuana.

“It’s sad that we’ve had to take such extreme measures and uproot our lives simply because I need this one little amazing plant,” says Enedina. “I truly believe that marijuana has saved my life and I’m going to fight to get it legalized everywhere so that when my daughters need it, it will be there for them.”