By Gabby Landsverk, Sun Sailor Newspapers
For the month of February, Hopkins residents and visitors can indulge themselves in a sweet treat while also doing good.
Funds from a special cupcake will be donated to research on rare diseases, in honor of 2-year-old Chloe Barnes, who died in 2010 from metachromatic leukodystrophy.
Local bakery Amy’s Cupcakes has partnered with resident Erica Barnes, Chloe’s mother and founder of the nonprofit Chloe’s Fight, to raise both funds and awareness for rare disease research.
Barnes said cupcakes seemed like the perfect way to highlight Chloe’s personality, with all of its sparkle, playfulness and childish wonder. Although only 2 years old, she said her daughter was fearless until the very end.
Barnes, also mother to Eva, now 9, and 12-month old Cade, said Chloe’s infancy began just like any other.
“We were kind of your average young couple with two kids,” Barnes said. “She was fine, she seemed perfectly healthy.”
Around 13 months old, however, Chloe started exhibiting strange symptoms, such as inexplicable pain during the night and an ability to progress through normal toddler skills, such as learning to walk.
An MRI finally diagnosed Chloe, at age 2, with metachromatic leukodystrophy, a neural disease that slowly deprives the body of myeline, the fat that coats nerves and helps the brain communication with the body.
Shortly after, the girl underwent a stem cell transplant, a very dangerous procedure, but her only chance of survival. She died several weeks later, from complications of the transplant as well as the effects of the disease.
Throughout the process, Barnes said she was in shock.
“When people ask if this was my worst nightmare — no, I had never a had nightmare this bad,” she said.
Since Chloe was one of few people diagnosed with the disease, Barnes had a difficult time finding resources when her daughter was diagnosed and support after she died.
“One of the hardest things is you’re so adrift — we had never ever heard of something like this,” she said.
When a friend suggested that Barnes try organizing a 5K fundraiser, the idea immediately became a way of moving forward through a incredibly difficult time.
“I needed a way to grieve,” Barnes said. “Grief is going to be a part of my life. It’s not going away. I might as well use the energy in a positive way.”
The first 5K, in 2011, was an immediate success and prompted a follow up. Before long, Barnes had partnered with the Taste of Greece festival in Minneapolis, bringing the fundraiser to a wider audience.
Barnes and her family launched the nonprofit in 2013, and got it certified in 2014 to continue the 5K and donate funds to researchers at the University of Minnesota.
“We’ve been raising money and awareness every since,” Barnes said.
The organization doesn’t just support patients with the disease and their families, but also those dealing with a cluster of about 30 to 50 rare degenerative neural diseases.
While the symptoms may differ, Barnes said the diseases all have a few things in common: constant misdiagnoses, insurance challenges and doctors who may never have heard of the condition, let alone how to treat the condition.
“When your doctors don’t even know about it, you end up being the expert,” Barnes said, who found that her research made her more informed about her daughter’s disease than many of the hospital staff members.
Barnes’ background, as a speech pathologist, left her uniquely prepared to deal with the challenges of losing a loved one to a terminal illness.
“I was so blessed in my profession. I saw so many families who dealt with end-of-life decisions gracefully,” Barnes said. “I had those conversations with my husband long before Chloe.”
Husband Philip Barnes grew up in France, and both members of the couple spend a lot of time traveling, gaining perspective from cultures in which death and loss is simply another part of life.
“We also had a strong faith community that supports and helped us along the way,” Barnes added.
She said couple also tried to be as open and honest about the process as possible with their older child, Eva.
“She’s very healthy and has shown a wisdom beyond her years,” Barnes said.
She hopes Chloe’s fight will one day be able to start a mentorship program, pairing those who have dealt with the loss of a family member to rare disease with people just beginning the grieving process.
Many of the diseases, including MLD, are not curable. Barnes said the goal is to fund research for effective treatment as well as raise awareness and support for families struggling with a diagnosis.
While she someday dreams of managing Chloe’s Fight full-time, Barnes runs the nonprofit in whatever spare time she has outside her day job.
“I like to joke that it’s my hobby,” she said. “But it’s grown little by little, organically.”
That’s how Amy’s Cupcakes became involved. Barnes was looking for a way to spread the word about Rare Disease Day among the Hopkins community. She started by thinking of things that Chloe would have loved, which, like most 2-year-olds, included cupcakes.
Barnes reached out to Amy Brace, owner of Amy’s Cupcakes, about crafting a custom cake in her honor.
“She’s a lovely local business owner and the story really resonated with her,” Barnes said.
The pair spent some time talking about Chloe, her personality and her quirks. Barnes sent Brace a video of Chloe — in response, Brace invented a cupcake that perfectly captures the girl’s bright personality.
“She’s a real artist,” Barnes said of Brace.
The two-toned swirls of color make the cupcakes stand out. While the final flavor remains a secret, Brace said it’s a mix of sweetness with a little bit of spice.
“I wanted to something sweet and spicy for such a sassy little girl,” Brace said. “It really shows her sparkle.”
Chloe’s cupcakes will be sold throughout the month of February, and a portion of the proceeds will go directly to the nonprofit in her name, Barnes said.
“Amy really cares about community, and I love that about her,” she said.
The funds will help continue the mission of Chloe’s Fight, providing support to researchers and continuing to reach out and inform the public about rare diseases. Most importantly, Barnes said, it creates a legacy befitting Chloe’s strong spirit.
“It gives us an opportunity to talk about Chloe still, to keep her memory alive and have a relationship with her,” Barnes said. “This is the way I get to parent her — I don’t get to take her to soccer practice or help her plan her wedding. But by doing this, I get to keep being her mom.”
Contact Gabby Landsverk at [email protected]