Just days before 21-year-old Mary Elizabeth Hopkins passed away, her father, Mike, stood in the driveway of their Covington home at dawn and listened to her singing in her bedroom. Mary Elizabeth was known for her love of music, and would often sing to herself and her family.

“She was happy,” he says of his daughter’s last week. “She was just very happy, but underneath she was a fragile child.”

Mary Elizabeth died Friday November 7 of cumulative effects related to the mitochondrial disease she was born with. She is survived by her parents, Kelli and Mike, and her sisters Michala, 17, and Marlee Ann, 12. Her 6-year-old brother Abe, who also suffered from seizures, passed away in July.

Kelli and Mike say they feel lucky to have loved, and been loved by, Mary Elizabeth for so long, especially given her delicate health.

“I think it’s something we knew was going to happen, eventually; I just didn’t expect it to happen three months after her brother ,” Kelli says, her voice breaking. “The timing, I mean, I know—we’re Christians, and we know the scripture and the date was planned already and God knew but I just…I expected to have had more time to process what happened with Abe.”

The Hopkins also extend their thanks to the community that has rallied around them throughout the years, especially in times of hardship. In addition to being active church members, the Hopkins have also been vocal about sharing their story in hopes of educating others about special needs children and encouraging legislation that could help them, particularly a medical marijuana bill that would allow for cannabis based treatments.

Although they are in mourning, the family is going ahead with their plan to move to Colorado this week so that Michala, who has Aicardi Syndrome among other medical issues, can have access to cannabis oil supplements. Cannabis oil has reportedly been effective in treating seizures in children and is currently undergoing clinical trial.

The move was a last resort for the family after failing to enroll their children in studies that would have allowed them to travel for treatment but continue to live in Covington near family and friends. Now, they are faced with maintaining two homes, one in Boulder and one in Covington, while Mike flies back and forth to continue his job as executive director of the Newton County Water and Sewage Authority.

“We just feel like we can’t lose another child. We have to do all that we can to get Michala some help and Georgia’s not doing anything,” Kelli says in reference to Georgia lawmakers’ failure to pass a medical marijuana bill on March 20. “Hopefully they will do something in 2015 and we’ll be able to come back home.”

The bill has faced opposition from law enforcement, faith based groups and some in the medical community, but Mike says much of that resistance is rooted in misunderstanding. He emphasized the difference between medical marijuana legislation and bills allowing recreational use such as those that passed in Washington, Colorado and Washington D.C.

“I would say to those really hard core people who are just completely against it: We’re here every day of the week. Come stay with us, and if you’re still able to walk away and say ‘I still oppose anything that would help a child that’s going through what these children are going through’ then ‘God bless you’ is all I can say,” Mike says.

Georgia State Representative Allen Peake, a champion of the medical marijuana bill, says the Hopkins’ case is “a clear example of why we cannot move fast enough on medical cannabis legislation in Georgia.”

Peake’s charity, Journey of Hope, is helping the Hopkins and other families move to states where medical marijuana and cannabis based treatment is legal. He said he would oppose recreational use as strongly as he supports the legalization of medicinal marijuana.

“It is insane that families are having to leave Georgia, leave their support networks, their families and their jobs, to go to another state where cannabis oil is legal,” he says. “We have to [pass legislation] before more children die.”