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news News Monday, November 16, 2020 Monday, November 16, 2020 10:20 AM - Monday, November 16, 2020 10:20 AM

Rewriting their stories

Host parents play important role in Shriners Hospitals international efforts to change lives

Rewriting their stories

It’s less than an hour before surgery, and Soumaila is taking deep whiffs from an oxygen mask that has been scented with cake batter. The mask isn’t hooked up to anything. It’s a replica that is part of a kit used by the child life department at Shriners Hospital for Children — St. Louis to help make kids more comfortable before surgery.

Soumaila is enthralled.

“Mama Amy! Mama Amy!” said the 10-year-old boy from the west African nation of Burkina Faso, thrusting the mask at the woman who has served as his host mom for the past two weeks. She puts the mask up to her face and smiles back at the boy whose leg the hospital is tasked with fixing. He slides across the hospital bed and folds himself into her arms. 

“Mama Amy” is Amy Nicholas, an Arnold, Missouri, resident who, along with her husband, Greg, has served as host parent to five children from across the world over the past three years. She is one of three host mothers currently shepherding international children through surgeries and follow-up physical therapy at the St. Louis Shriners Hospital.

“Without our host parents, these kids wouldn’t be able to come here to get this life-changing treatment,” said Jill Hahn, clinical care coordinator for the limb deformity team at the hospital. “You can’t really put into words how meaningful they are.”

Cursed or demons

There are some words and phrases, however, that simply fit. One is "life-saver,” and it isn’t an exaggeration.

Kids who come to the St. Louis Shriners Hospital from developing countries are often in grave danger. Take, for example, Lorencia, a girl from Haiti who was the first child Amy and Greg hosted, back in 2017.

Lorencia was living in an orphanage before she came to Shriners Hospital for treatment – not because her parents were gone or didn’t want her. Rather, it was because the orphanage provided a safe place to house a young girl whose legs were so deformed she walked by scooting along in a handstand.

“If you have a deformity in some parts of the Third World, you are completely shunned,” Amy said. “You are said to be cursed, that you have a demon. You have to be hidden from your community. Your life is definitely in danger.”

And so Lorencia stayed hidden in the orphanage, where her parents would come visit her.

That was before Tami Shobe, founder of Children’s Medical Mission West, stepped in. Tami is the force behind the Waynesville, Ohio-based nonprofit that brings kids to the United States for treatment that literally can snatch life from the jaws of death. She started the organization nearly 18 years ago and has coordinated the care of nearly 800 overseas children. She is the organization’s lone employee, though she is quick to credit the network of overseas liaisons and domestic doctors and hospitals with whom she partners.

“The St. Louis Shriners Hospital is just awesome. I wish we had more of them,” she said. “I adore them because they accept any child and get them right in there, and we have a great group of host families in the area.”

What makes Shriners Hospital so special, she said, is that the staff treats kids from wherever in the world they might come, regardless of a family’s – or host family’s – ability to pay.

“It’s easy to find doctors who are willing to help,” Tami said. “It’s much more difficult to find hospitals that are willing to take on the great expense. Shriners Hospital does that, and happily.”

Love given, returned

So while Shriners Hospitals doctors fix conditions that, untreated, would lead to more extreme problems as the children grow, Amy, Greg and the other host parents do their thing: running the kids to and from medical and physical therapy appointments, feeding, clothing and entertaining them – but most importantly, giving them love during what can be a scary and uncertain time.

What is astounding is how quickly and effortlessly that love is returned. For Soumaila to call his host parent “Mama Amy” after just two weeks seems to flow as naturally from his limited English vocabulary as if he were her very own son. The family, which includes her daughters Gabby, 21, Claire, 17, and Maura, 14, does what families do, no matter how many extra kids are in the house; in October, those “extras” totaled three.

The family plays games and records funny videos, like the one of Soumaila trying to get Alexa to play a song he likes. When it comes time for bed, the Nicholas kids provide comfort for their visitors from so far away; Lorencia has slept alongside Claire during her four different stays with the family, unwilling to be in a bedroom all her own because she is used to sleeping in a one-bedroom home with five other family members. Right now, Maura sleeps on the floor in Soumaila’s room.

“I just love them as much as they can while they’re here,” said Claire as Soumaila, with his right leg encumbered by an external fixator, climbed up into her lap. “It’s almost like having more of a best friend than a sibling. He’s just my buddy, ya know?”

The challenges of hosting

And he’s a buddy that will, in six or seven months, return to his home country.

Being a host family isn’t for everyone. There is no funding support from the organization, which pays only for transportation to and from the child’s host country and for any documents needed in the process. Working parents might find it challenging to keep up with the doctor appointments and daily care without a strong support network. The kids who arrive come with no medical insurance, meaning an ear infection or emergency room visit could hit the family budget hard. But it’s the leaving that is the hardest part.

“It’s insane for me to think that their parents put them on a plane and send them here not really knowing the host parents, not really knowing what the doctors are going to do specifically. That type of bravery is astounding,” Amy said. “I am not that brave when they have to leave.”

So when she puts the kids back on the plane, knowing she might never see or talk to them again, Amy cries. A lot.

Rewriting their story

But then Tami will call or email her about another child from across the world who needs to come to the United States for treatment. And Amy is ready – always ready – to help change the next life.

“This is all about rewriting their story,” Amy said. “I just house them while the doctors actually rewrite their story. And then they go back to their home country, and they can continue rewriting that story by showing their peers, their peers’ parents, that they are nothing to be afraid of, that they’re not cursed and aren’t demons.”

She pauses, smiles at Soumaila. “They’re just kids.”