A Life-Changing Month for Johan

Boy returns to Honduras with iPad, greater independence 

One morning in the not-too-distant future, Johan will leave his house and join his classmates on the walk to school in his mountainous home village outside Ocotepeque, Honduras.

Slung on his back locked safely in a sturdy case will be an iPad donated to him during his month-long journey at Shriners Hospitals for Children – St. Louis, a month that opened up a world of opportunities for the quick-to-smile 4-year-old.

Johan was born without a left arm, much of his right leg and a right arm that extends only a few inches from his shoulder. To imagine how his early life has been limited is to understand why his mother, Ana, jumped at the chance to come to the United States for care at the St. Louis Shriners Hospital via its partner, the World Pediatric Project.

The original purpose of Johan’s visit was so the experts in the hospital’s Pediatric Orthotic and Prosthetic Services department could sculpt a perfectly adjusted prosthetic right leg. Then the occupational and physical therapists at the hospital got ahold of him.

“He was originally supposed to leave shortly after receiving the prosthesis, but when we saw what the possibilities were, we went to World Pediatric Project and asked if there was any way we could extend his stay’” said Michelle Stading, an occupational therapist at the St. Louis Shriners Hospital for the past year-and-a-half.

World Pediatric Project is a Virginia-based organization with a St. Louis location that brings kids from across the world to the United States for treatment they would not be able to receive at home. Its representatives were more than happy to change the dates on the family’s plane tickets home.

And so Michelle and physical therapist colleague Jeni Wallengberg went to work with an initially reluctant Johan.

“When Johan first arrived, he was terrified. We built our relationship over several sessions by interacting with his preferred toys – music, play food and iPad games – until he felt more comfortable,” Stading said.

That took about three sessions. From there, the therapists worked with Johan to develop his core strength to help his balance and with various adaptive devices to help him become more independent. While he was learning how to walk for the first time with his shiny-red prosthetic leg, Stading adapted a toothbrush with the proper bend to attach to a cuff strapped to the existing portion of his right arm.

“When we asked Mom what her goals were for when they returned home, she said her main goal is for him to attend school and have a career,” Stading said. “Interacting and succeeding in a school setting would be hard for him if he could not write or type notes.”

What Johan needed was an iPad, the tablet with the greatest accessibility for people with different abilities. In his case, an iPad pencil and voice control commands in his native Spanish would provide the greatest benefit. But the cost was more than a bit higher than the $1 Stading had spent at Target for the toothbrush she adapted for Johan’s use.

Enter Joe Shively, hospital board member and Moolah Shriners Potentate. Hospital staff reached out to him to see if a donor might be willing to give Johan what would open up a brighter future for him and his family. Shively immediately thought of the Three Rivers Shrine Club in Poplar Bluff, Missouri.

“They jumped at the opportunity to help the family,” Shively said. “The devotion our Shriners have to the kids we treat is beyond measure.”

And so shortly before his return to Honduras, Johan was surprised with a newly purchased iPad.

“The chance to participate in school and access technology will open doors for him and provide a path toward having a career,” Stading said.

Thanks to the overall care he received during his month in the United States, Johan returned to Honduras in early June far more independent than when he left. In addition to help via the iPad, he now no longer needs to be carried from Point A to Point B, easing the load on his mother. Johan is now walking with some assistance, and Stading said the hope is he will soon do so independently.

As for whether he will ever return to the United States and the medical team whose lives he changed during his first visit, the question remains. There’s a chance he will come back for new prosthetics as he grows. So much depends on donations to Shriners Hospital and organizations like World Pediatric Project.

“Sometimes we just have to give everything we possibly can while they are here and then hope for the best,” Stading said.

She, Johnson and Wallenberg all said they are grateful to work for a hospital that reaches out into the world and that is based on such a caring mission.

“It’s very rewarding and humbling to work someplace that is supported by such a giving organization like the Shriners,” she said. “When there’s a need like Johan’s, there is no hesitation. The kids always come first.” 


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