Hooked up to a battery of machines, Aria Rose Grams can still turn a curious eye to her toys, give her parents the gift of an occasional smile and whisper "Hi, Daddy."
The 1-year-old South Range girl is a warrior.
"She's strong; she's a fighter," said her father, Joshua Grams.
They named her well.
"Aria means 'melody,'" said her grandmother, Billie Van Ert. "In Hebrew, it means 'lioness.'"
Less than two weeks after her first birthday, Aria went into cardiac arrest and collapsed at home. An ultrasound in Duluth revealed Aria had an enlarged heart. She was later airlifted to Children's Hospital in Minneapolis where the 1-year-old was diagnosed with restrictive cardiomyopathy, a rare condition in which the heart muscle does not relax normally between heartbeats. After three cardiac arrests, six open-heart surgeries and dozens of blood transfusions, Aria is waiting for a heart transplant at the Mayo Clinic in Rochester.
"She's just the cutest little girl," Grams said. "That year I had with her, I got to love her, see her personality."
The tot's mother, Tara, hasn't seen their home for three months. For weeks, her father has slept at her bedside on a cot. Siblings Tristan, 5, and Noah, 3, are also close, living at the Ronald McDonald House until school starts.
"Twenty-four hours a day one of us doesn't leave her side," Grams said.
Although they focus on the positive signs - a smile, a word, a head bob to a song - every day brings a new crisis. A suture might pull out during a bandage swap, a clot may develop in a tube.
"There's something going on every day," Van Ert said.
It's scary, Grams said, but the staff at the Mayo Clinic is "incredible."
"They're the best of the best," he said.
A modified heart-lung machine called an ECMO is giving Aria the gift of time as her family prays for a heart, a chance to hold her like they used to before tubes and machines.
"I'm hoping for a heart," Grams said. "At the same time, it's so sad to hope for."
Family and friends have rallied around the young family. Grams' employer, Altec of Duluth, held a spaghetti fundraiser. Van Ert and a neighbor are caring for their home. Volunteers are hosting a benefit today for the family.
"When tragic things happen, you see people's true colors," Grams said. "They go above and beyond."
Van Ert said organizing the benefit, which kicks off at 3 p.m. Saturday at the Belgian Club, 3931 E. Second St., Superior, has been bittersweet: Bitter because of her granddaughter's struggles, but sweet to see the community's response.
"It has truly humbled me as I witness the outpouring of support and love from family, friends and even people I have never, ever met," Van Ert said. Everyone she has approached has lent a hand. The list of prizes to be auctioned off in various ways includes jewelry, artwork, gift certificates, golf and event passes, an Eau Claire resort stay, a wood carving, a stone birdbath, gift baskets, a three-month membership to Anytime Fitness, a Packer football and a camouflage bow.
"It's wonderful," Grams said. "I wish I could give every single citizen of Duluth and Superior a hug."
Saturday's benefit begins with a spaghetti meal from 3-5 p.m., followed by live music and karaoke into the night. Tickets are $10 for adults, $5 for children ages 6-12, and children ages 5 and younger can attend for free. Contributions to the family can also be accepted online at www.gofundme.com/ariarose15, and checks can be sent care of Van Ert, 6062 S. County Road E, Poplar, WI 54864.
More information on Aria Rose can be found on the Heart Warrior Princess Aria Rose and Benefit for Aria Rose Facebook pages. Each includes a video her father made to increase awareness of the need for organ donors.