Update: Marlee Anne Hopkins wanted to raise $21,000 for the University of Georgia's Miracle fundraiser. On Thursday, March 3, she told the Covington Kiwanis Club she had raised $23,073. The money will go to the Children’s Healthcare of Atlanta (CHOA) in honor of Hopkins' siblings.
It’s called a dance marathon, but the annual University of Georgia (UGA) Miracle fundraiser isn’t all about dancing.
It’s about raising money to benefit Children’s Healthcare of Atlanta (CHOA) and giving the “miracle” children, CHOA’s former and current patients, a chance to dance, play video games, share their stories and spend time with college students.
For Marlee Anne Hopkins will take part in the “standing challenge” during the Feb. 20 through 21 event at the Tate Student Center’s Grand Ballroom. For 24 hours, she will stand “for the kids who cannot ... in honor of Michala, Mary Elizabeth and Abe, who could not stand.”
She has set a goal to raise $21,000 this year, a tribute to her late sister, Mary Elizabeth, who died in November 2014 at the age of 21 from mitochondrial encephalomyopathy, a condition which causes seizures and the failure of the brain to communicate with the nervous system.
Mary Elizabeth was the second of Marlee Anne’s siblings who died of a rare disorder. Just more than five months earlier, Abraham “Abe” Hopkins, 6, died of what was suspected to be mitochondrial disease, which caused constant seizures. Her remaining sister, Michala, 18, has Aicardi Syndrome, another rare disorder occurring only in females and characterized by seizures, retinal abnormalities and developmental disabilities.
“I’m raising that money for UGA Miracle,” Marlee Anne said. “All their fundraising goes to CHOA. [For] their whole lives, Michala, Mary Elizabeth and Abe have been hospitalized there. It means so much being able to give back to the hospital.”
Marlee Anne has been raising money for CHOA since 2011. This is the third year she’s money through the UGA Miracle Dance Marathon. According to her story, shared at the Children’s Miracle Network’s Dance Marathon web site [http://events.dancemarathon.com/ ] Mary Elizabeth “taught me to love unconditionally, and always smile even when I don’t feel like it.”
She said she thinks she may be the youngest person taking part in the standing challenge this year.
“The standing challenge is really hard,” she said, “and sometimes it can represent what the miracle children go through. You might struggle with it, but with all the encouragement and inspiration, you can get through it.”
Family story shared
The Hopkins’ family story has been shared frequently, not only in local and regional media, but at fund raisers and before the Georgia state legislature.
The family became medical refugees in November 2014, after the death of their oldest and youngest members due to excessive seizures. Because Michala continued to suffer from multiple daily seizures, the family moved to Colorado to take advantage of the availability of legalized medical marijuana.
The move came after Georgia’s lawmakers failed to pass a bill that would allow the legal use of cannabis oil, which is low in tetrahydrocannabinol (THC), the component that makes someone high, and high in cannabidiol (CBD), the medical component.
Two months leading up to the family’s move to Colorado, Michala had 352 seizures, said Mike Hopkins, the children’s father. She had 46 after she began using cannibus oil in Colorado.
For the next 10-months, the family lived in Boulder and the Denver metro area, one of 17 Georgia families and 400 families nationally who became medical refugees in Colorado. Mike Hopkins kept his job as Director of the Newton County Water and Sewer Authority, accumulating 95,000 frequent flyer miles.
A loophole in a farm bill passed in 2015, which allowed the purchase of low doses of cannibus oil, considered hemp, allowed the family the choice to move back home to Covington.
“Our family, our support system, my job are here,” he said. If Michala’s dosage rises, the family could once again become medical refugees.
For Marlee Anne, the move out of state was hard in the beginning. “At first I didn’t like it,” she said, “but after awhile, I got involved with our church and made friends, and I absolutely loved it.”
But she was thrilled when the family could return home and Michala could still get the medicine she needed.
What she’s learned
A polite and well-spoken teenager, Marlee Anne said she has been blessed by CHOA and UGA Miracle. “Being involved with this organization has really meant so much to me and helped me through a lot of things. You can really get through [difficult times] with the help of others and their encouragement, and with God. People can still do things after they’ve struggled so much.”
Her experiences have set her on considering two different careers: pediatrics and counseling. She said, “There’s always a piece of my heart wanting to be a pediatrician, but I’m also interested in going in the church and in counseling.
She said her experiences having siblings with disabilities have “given me a sense to love every kind of person, no matter what type of person they are, to literally see no boundaries,” she said. “I really do believe I love more than I ever would.
I had a friend with special needs in Colorado — I’ve adapted with different things to be good with, be friends with everybody.”
It’s hardly unexpected, but her parents are proud of her passion.
“She had to grow up awfully fast,” said Mike Hopkins. “In December, she got up and spoke too about 1,000 UGA students. They’ve been a big blessing for her over the last five years.
“Marlee Anne does this [fundraising] on her own,” he said. “All we do is have oversight. Last year, she raised over $8,000.”
Kelli Hopkins said she loves her youngest daughter’s heart. “I love that she wants to keep the story of Mary Elizabeth and Abe going.
“She has that vision that when she sees someone who needs help, she wants to help,” she said. “Every Christmas, she would adopt children and she wanted them to have toys, even over [receiving] her own.
“In Colorado, there were homeless people on every corner,” she said, “and she wanted to give them money all the time, even if it was only a dollar.”
The $21,000 Marlee Anne hopes to raise for UGA Miracle this year will go towards the student-run organization’s goal of raising a million for CHOA.
“If they raise $1,000,000, the CRIU (Comprehensive Inpatient Rehabilitation Unit) will rename their rehabilitation gym after UGA Miracle,” Marlee Anne said.
To learn more about UGA Miracle, visit ugamiracle.org.
To make a donation in Marlee Anne’s name, make checks payable to CHOA, with Marlee Anne’s name in the memo line and mail to UGA Miracle Office, Attention: Personal Donation, 153 Tate Student Center, Athens, Georgia 30602.
Donations can also be made online at http://events.dancemarathon.com/index.cfm?fuseaction=donorDrive.participantDonations&participantID=62518.