Circle of friends

Conway woman, daughter treated at Children’s

Marie Smallwood of Conway holds a picture of her daughter, Erin Maki, who had a rare disease and died in March 2010 at Arkansas Children’s Hospital. Smallwood also was treated at the hospital when she was a teenager. She joined the Faulkner County Circle of Friends chapter, which supports the hospital and sponsors the Freezin’ for a Reason race as a fundraiser.
Marie Smallwood of Conway holds a picture of her daughter, Erin Maki, who had a rare disease and died in March 2010 at Arkansas Children’s Hospital. Smallwood also was treated at the hospital when she was a teenager. She joined the Faulkner County Circle of Friends chapter, which supports the hospital and sponsors the Freezin’ for a Reason race as a fundraiser.

When Marie Smallwood’s 14-month-old daughter died in 2010 at Arkansas Children’s Hospital in Little Rock, an employee in the intensive-care unit sat and held the young mother’s hand.

Smallwood, 33, of Conway said through tears that she doesn’t know the woman’s name, but that’s an example of how the nurses and staff became like family to her.

Although her parents had been with her and her daughter, Erin Maki, at the hospital, they had taken a break and were in Conway.

“The morning she passed away, I didn’t have anyone there. The nurses became my family; they really did. They were with me the whole time,” Smallwood said. “After she passed away, I didn’t have anywhere to go. I sat at the desk at ICU, and the lady held my hand the whole time. I asked, ‘Can I hold your hand?’ She said, ‘Honey, you don’t have to ask for my permission.’”

Smallwood’s daughter was diagnosed at 8 months old with Krabbe (KRAH-buh) disease, a rare and inherited disorder that destroys the protective coating of nerve cells in the brain, as well as in the nervous system. Smallwood said the disorder was discovered when her Conway pediatrician suggested an MRI to try to find out why Erin wasn’t meeting some of her developmental milestones.

Smallwood said Erin spent a month in Arkansas Children’s Hospital before she died March 15, 2010.

Although the outcome wasn’t what she hoped and prayed for, Smallwood said, her daughter got wonderful care at the hospital.

Smallwood now volunteers as a member of the Faulkner County Circle of Friends Chapter, which supports Arkansas Children’s Hospital. The chapter will host the fifth annual Freezin’ for a Reason 5K and 10K on Feb. 4 to raise money for the hospital. Smallwood will be at the race with Team Erin’s Legacy in memory of her daughter.

The race will begin at 9 a.m. at John McConnell Stadium at Conway High School, 2300 Prince St.

Smallwood, who is associate director of career services at the University of Central Arkansas in Conway, said the hospital has played a big role in her life.

“They’ve clearly been there my whole life, pretty much,” she said.

Her history with Arkansas Children’s Hospital goes back to when she was a teenager, long before she dreamed she’d have a daughter who needed the hospital’s services.

The Prescott native was treated there beginning at age 14 for a tumor on her pituitary gland. She started having health problems at 13, she said, including headaches.

“There was just a lot of stuff going on in my body that was kind of weird,” she said. Her physician sent her to Arkansas Children’s Hospital for an MRI.

The headaches turned out to be her eyesight, and she got new glasses.

“The Lord knew what needed to happen,” she said. “I found out I had a pituitary tumor. Thank the Lord, it was benign. At first, they were just treating it with medication,” Smallwood said, but because it was a chemotherapy pill, she was told she would never be able to have children.

“At 14, I didn’t care,” she said.

Smallwood said she missed a lot of school going back and forth from Prescott to Arkansas Children’s Hospital. When she was 17, she opted to have surgery for the tumor. “I had no idea what I was getting myself into,” she said.

The surgeons went through her nose to get to the tumor, she said.

It was Easter, and she was in the ICU with younger children. When the hospital employees gave out stuffed animals, coloring sheets and blankets to the children, they included Smallwood, too.

“I still have the blanket today,” she said with a laugh.

“They took so much care of me, and I don’t come from a family with a whole lot of money,” she said.

Her father worked for Firestone in Prescott, and her mother, who has since died, worked at Tyson Foods in Hope. Smallwood has six siblings, including a foster brother.

When it came time to pay the bills after surgery, Smallwood said, the hospital suggested her family apply for assistance.

Smallwood said her hard-working parents didn’t think they would qualify, but they did. After insurance and with the assistance, the family didn’t owe any money, she said.

“In my adult years, I figured it out. When Circle of Friends gives through the foundation, that money is divvied up to different programs. One part is for people who can’t pay all of their bills,” she said.

Smallwood said she continued to go to Arkansas Children’s Hospital for checkups, even while she was a student at the University of Arkansas at Fayetteville.

She said she started volunteering five or six years ago with the Faulkner County Circle of Friends Chapter.

“It’s one of those things — I originally started volunteering because of how I was treated and how everything was when I was a patient, because I was there a lot,” she said. “I truly know as an older teen, you understand more than just the kids; you understand that people really care, and they’re not just doing it because it’s their job.”

Smallwood said she bonded with race founder Amanda Mulhearn of Conway, who had two daughters who were treated at Arkansas Children’s Hospital. The girls died five years apart of different causes: Charlotte, 6 weeks old, died in 2007 of a rare viral infection in her heart, and Stella, 3, died in 2012 of a brain tumor.

“Amanda and I bonded instantly with both of our stories and the whole thing — it’s still that sense of community,” Smallwood said.

Mulhearn said she can’t believe it’s been five years since the race started.

“It’s absolutely amazing and wonderful that it’s still going on after five years,” she said. “It still means a lot to have the support of the community and the people who love and care about us and the people who are willing and the companies who are willing to sponsor it.

“That’s where the money is made. Really, the race is about giving some awareness for Arkansas Children’s Hospital, but also for the illnesses that we’ve dealt with. … I just really hope we aren’t just fighting these battles, that we’re winning them and winning them all.”

Mulhearn added that the research the hospital is doing is important for everyone.

She said children go to Arkansas Children’s Hospital because of the pediatric care for non-life-threatening illnesses, too.

“Even with my case and Amanda’s case,” Smallwood said, “it’s still the best possible care [our daughters] could have had.

“Everybody’s coming together to raise money for Children’s, and you also get an opportunity to do a memorial to your kid, or just show this is why Children’s is important. Even though my daughter isn’t alive, it’s for all the kids they helped.”

Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.

Upcoming Events