5,000 reasons to smile

Beads mark 5,000 milestones 9-year-old AnnaRose Sciver met on her road to a new heart

By Michelle Champalanne

AnnaRose Van Sciver earned about 5,000 beads for bravery during her stay at the UF Health Shands Children’s Hospital.

After 238 days in the hospital, 9-year-old AnnaRose Van Sciver is finally out, with a new, healthy heart and an army of beads to prove her bravery. Nearly 5,000 colorful, stringed beads decorate AnnaRose’s room in the apartment where she and her family are living while doctors continue to monitor her recent heart transplant. Each one represents a milestone, some minor and some major, on her journey to recovery.

Originally from North Tonawanda, N.Y., AnnaRose suffers from a rare congenital heart defect known as hypoplastic left heart syndrome, which means the left side of her heart never developed properly. She had three open-heart surgeries in Buffalo, N.Y. In 2011, her family moved down to St. Cloud, Fla., about three hours away from Gainesville, for a warmer climate. They had noticed her health flourished during summertime and thought Florida’s year-round heat would be beneficial to AnnaRose.

But in June 2013, AnnaRose’s health took a turn for the worse. She was admitted to UF Health Shands Children’s Hospital and jumped to the top of the list for a heart transplant. But it was last October when the fight got harder. Her heart was failing and she desperately needed a new one.

“As a parent, you just want to make her better,” said Cean Van Sciver, AnnaRose’s mother. “But there’s pretty much nothing you can do at that point.”

Her mom and dad took turns staying in the hospital with their daughter. Her three siblings stayed back home; two were still up in New York and another is finishing high school back in St. Cloud.

During her stay, AnnaRose often visited with Amy Bucciarelli, M.S., ATR-BC, a clinical art therapist with the UF Health Shands Arts in Medicine program, who worked with AnnaRose to express her thoughts and feelings in a positive way.

“Art therapy, especially for someone like AnnaRose, allowed her to act out the things she was maybe frustrated about in a constructive way,” Bucciarelli said.

Together, Bucciarelli and AnnaRose made puppets and folded origami — anything to let AnnaRose be the director for a little while.

“Taking control is important for a kid who’s hospitalized because they lose so much control when they are in the hospital,” Bucciarelli said.

Each time AnnaRose passed a milestone, no matter the size, she received a brightly colored Bravery Bead. The national program rewards pediatric patients with a specific bead for each accomplishment made during their stays in the hospital. Eventually AnnaRose’s pile grew. Bucciarelli worked with guest service specialists Ginny Profumo, who brought Bravery Beads to UF Health, and Marian Myers, as well as visual artist-in-residence Sandra Murphy-Pak, to string 2,000 of the beads together to make a mobile for AnnaRose. They wanted to create something functional for AnnaRose to enjoy in the hospital, but also to take home.

“It represents her bravery and how strong she’s been during her stay at UF Health,” Bucciarelli said.

In March, the family received the news that there was a heart available for AnnaRose.

“We were happy that it was for her,” Van Sciver said, “but we were very sad for the family too.”

AnnaRose went into surgery March 2. Her family is grateful for the anonymous family that donated the heart —“Prince Toby” as Disney-fan AnnaRose calls “him”— and they’re very happy with how things worked out.

AnnaRose was discharged on March 28 and moved to transplant housing. Now, she loves the simpler things in life, like going for a car ride and seeing the city.

“She’s happy and full of life,” Van Sciver said.

The family is moving to Gainesville, so they can be closer to the hospital. Although AnnaRose prefers the brisk New York weather, her family thinks being near UF Health is best.

“I’m a little protective of her, to make sure nothing happens,” Van Sciver said.

Now, when she looks at the mobile, each bead reminds AnnaRose to stay brave and makes her feel better. She received her final bead after the heart transplant surgery, when she was released into transplant housing.

Since her surgery, AnnaRose has been playing dress-up and enjoying the outside.

“I was a superstar,” AnnaRose said. “I haven’t cried as much.”

So, how did AnnaRose stay so strong and brave through her journey?

“It’s pretty easy,” she said.

“But it’s kind of a secret.

I was just born that way.”