A rain storm in Kenya last year brought Mayian Musembi to Charlotte this summer.
Charlotte pediatric physical therapist Amy Sturkey was on vacation in the summer of 2012, photographing the great animal migration in Kenya. Rain forced her group into a lodge in the middle of nowhere, where she met 11-year-old Mayian and his family.
The Musembis brought Mayian, now 12, who has quadriplegic cerebral palsy, across two rivers in a wheelchair to watch the migration.
“I was so impressed with this family’s will and determination to get this child out on safari that I went over to introduce myself,” Sturkey said.
Sturkey and the Musembis hit it off.
Mayian’s mother, Catherine Simaton, was pleasantly surprised by Sturkey’s demeanor. “Most of the time,” Simaton said, “people only ‘see’ the wheelchair and not Mayian.”
“She said, ‘Come to Charlotte, we can help him.’ ”
That’s why Simaton, Mayian and physical therapist Grace Wanja spent the last six weeks in Charlotte, working on therapies to build his strength and independence. They are heading home to Nairobi, Kenya, on Tuesday, and will leave with a stronger child – and strategies and equipment to help others.
During one of their sessions in Charlotte, Sturkey told Mayian she approached him at the Kenyan lodge “because he was so handsome,” which got a huge grin from Mayian.
Before flying from Nairobi, Sturkey visited Mayian at home.
She made adjustments to Mayian’s wheelchair and encouraged his family to come to Charlotte to update his treatment program, braces (which Mayian got during treatment in Florida in 2008) and equipment.
Once she got home, Sturkey kept in touch. She networked with other therapists to help arrange the visit.
Sturkey said she knew a trip to Charlotte could change his life.
‘The powerful warrior’
The parts of Mayian’s brain that affect movement were damaged before or during birth, Sturkey said.
When he arrived in Charlotte, his trunk and neck were low-tone, or floppy, and it was hard for Mayian to activate his muscles, among other problems, she said.
During their stay, most mornings started at Child and Family Development on Park Road, where Mayian had physical therapy with Sturkey. The pediatric clinics provide speech, occupational and physical therapy for nearly 1,000 clients per week.
With her physical assistance and literal support, Sturkey and Mayian jumped on an indoor trampoline to help build his leg strength, before moving to an adapted swing.
Wanja helped Mayian grip the support bar in front, while Sturkey sat on the bench behind him, bracing his knees. She encouraged him to push up with his legs, as they swung in controlled circles and zig-zag patterns.
“That’s the powerful warrior I know you to be,” Sturkey told him.
Before their visit, there was no clear plan for Mayian. “We asked, ‘What can we do to make him independent?’ ”
Finances posed a large concern, as did staying so long and so far away from the rest of their family. But it was an opportunity they couldn’t pass up: not only for Mayian’s development, but also for what they could bring back to the children served by Therapies For Kids, the center Simaton and Musembi started for special needs children in Nairobi.
Simaton said she sold her car to help pay for the trip. With transportation, food, doctor fees and the cost of therapies – almost all of which were either offered at a reduced rate or free – Simaton said their visit cost more than $21,000.
After only two weeks in Charlotte, Mayian had started using his hands more and was able to feed himself, Simaton said. After evaluations, experts said Mayian can learn to read and write, and he’ll return home with an educational plan.
‘Life outside hospitals
In May 2001, Simaton was 29 weeks pregnant with Mayian – her first child – when she could no longer feel the baby moving. Within 48 hours, Simaton had undergone an emergency C-section when medical personnel realized the umbilical cord had wrapped around the baby’s neck. Mayian was born nearly 2 1/2 months prematurely and weighed just over 2 pounds.
He spent the next three months on a ventilator and was 9 months old before doctors said his slow development was more serious than the result of being so premature.
Since then, Mayian has gone to therapy centers with no children’s specialization, had in-home therapists and been to five schools, searching for the right balance between specialized teaching and social integration.
These frustrations – coupled with the country’s mentality that special needs are something to be ashamed of – motivated Simaton and Musembi to start Therapies for Kids in 2011.
“We decided that Mayian was not a ‘cabbage,’ as we had many times been told,” Simaton said. “His speech is good, he can communicate in both Kiswahili and English. We decided that we needed to get him to mix with other children and have a life outside the house and hospitals.”
‘Stretch a little farther’
The range of therapies Mayian has experienced in Charlotte may seem like playtime to many, but therapists say every activity he’s participated in – including karate, adapted water-skiing, hand-cycling, music therapy – has a benefit.
Mary Helen Bailey, occupational therapist with Child and Family Development, has met weekly with Mayian for hydrotherapy at the Harris YMCA indoor pool.
His pool exercises targeted all his muscle groups, working toward the goal of strengthening his core to help improve his balance, Bailey said.
Some of Mayian’s favorite activities included music therapy with Meg Johnson at Queen’s University of Charlotte. Johnson and Mayian sang and played a number of instruments: the autoharp; hand bells; a piano with color-coded keys that corresponded to printouts of colored notes; bongo drums and more.
“Each time we’ve tried to stretch a little farther,” Johnson said. “It looks like we’re just doing music, but it relates to nonmusical (skill development).”
‘How fortunate we are’
As Sturkey spearheaded the effort, things began to fall into place. Hospitality House agreed to hold a room for their arrival in early July. Then a room opened at Ronald McDonald House, where they’ve been staying.
Their plan was to stay four weeks but decided to stay longer because Mayian was making so much progress.
An unexpected blessing and expense will be getting the donated therapy equipment back to Kenya, Simaton said, though it will cost roughly $5,000 to ship. Simaton is working with churches to try to raise money to pay for the shipping.
Sturkey said $30,000 to $50,000 worth of equipment was donated, including power wheelchairs, orthotics and a handicap-accessible swing.
H Adams was one of 11 families to donate. Her son, Myles, has a diagnosis similar to Mayian’s. They stored the equipment in the living room for nearly eight months.
“I thought my journey was really tough till I met Catherine,” Adams said. “It made me see how fortunate we are to live in a country that has the resources for my child and other children like him.”
Adams said it was no coincidence that Sturkey and the Musembis met in the Kenyan wilderness, an encounter that will help countless children.
‘Nothing is impossible’
As they pack their bags to leave Tuesday evening, Mayian said he is most excited to see his father and younger siblings, Alma and Gary.
Mayian’s capabilities leaving Charlotte will be the benchmark going forward, Simaton said. He’s now able to push with his legs to go from sitting to standing, his range of motion has improved, and he can reach with more control, said Sturkey.
“I think this is one of those rare opportunities that what he experiences in Charlotte could change a country far away.”
Most importantly, Simaton said, Mayian’s mindset has changed. “It’s made him more confident; he knows he can do it.”
In addition to helping Mayian , Simaton said, she’s excited to start music therapy with the children in Nairobi.
“We have drums in Africa; we never thought to use those for therapy,” she said. “The biggest lesson for me is nothing is impossible. … I don’t want to wait, or forget, I want to run and just do it. I can’t wait to get home and just start working.”
Trenda: 704-358-5089; Twitter: @htrenda
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