On a particularly challenging day last school year, wearied from being strapped in and out of his stander, Vance Davis shouted his frustration through the halls of Sierra Vista Elementary School.
“I just want to walk again!” he yelled.
Special education teacher Mark Chartier remembers hearing Mark’s cry and how it “clapped at his soul.”
Vance has Ullrich congenital muscular dystrophy and autism spectrum disorder, the former of which took his ability to walk just before he turned 4. Now 10 years old, Vance is a fourth-grader at Sierra Vista.
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“I can never feel sorry for myself again because of what this little guy has gone through in his life and what he continues to go through … yet he responds so lovingly 99.9% of the time to the people around him and to his family,” Chartier said.
To help Vance walk again, a GoFundMe page has been set up to raise money to help the Davis family purchase a Trexo Robotics Gait Training System — an apparatus that helps children with disabilities experience walking. A $39,900 fundraising goal covers the cost of the Trexo, minus shipping, and 85 donors so far have chipped in $6,275 for the fundraiser as of Dec. 15.
Scott Myers, a friend of the Davis family, created the fundraiser.
“Because (Vance) can no longer walk, his muscles and joints have gotten tighter, and his scoliosis has worsened,” Myers wrote. “All these things cause him much pain and discomfort throughout the day and disrupt his sleep. What is even more heartbreaking is that Vance remembers being able to walk and would do anything to walk again.”
‘The Butterfly of Souls’: Vance meets each day with ‘perseverance and determination’
Even with the challenges he faces, Vance remains “full of personality,” his mother, Jennifer Davis, said. He is known for his quick wit, inquisitiveness and affinity for all things Ghostbusters. He always makes sure his little sister Presley feels included. He maintains a busy schedule and a positive attitude.
“I always say it’s hard to have a bad day when he’s there, because he just makes you happy and he makes you laugh,” Jennifer said. “It’s just so amazing to see him go throughout every day with perseverance and determination.”
On a typical day, Vance receives a massage and does stretches as soon as he wakes up. Monday through Thursday, he attends school for six hours. After getting off the bus, he receives applied behavioral analysis therapy until 6 p.m. He also may receive physical therapy, speech therapy or professional massage therapy during this time. He has ABA therapy from 9 a.m. to 4:30 p.m. on Fridays.
Chartier is Vance’s teacher for literacy and math. Vance has become a “master speller” and has come to excel at multiplication in the two years since he met Chartier.
Vance also has blossomed socially.
“He’s always cheering on his classmates, always seeing the best in every situation and seeing the best in his fellow students,” Chartier said.
Chartier wrote a poem inspired by Vance for an upcoming book of poetry. The poem details his interactions with Vance from times of remote learning to present day. Chartier recently read the poem to Vance and his family during a poetry reading at Analogue by Solar Roast. The poem closes with the line, “You are the butterfly of souls.”
“I truly believe that line in my poetry personifies him best,” Chartier said.
Since 2017, Vance has attended three-week-long, intensive therapy sessions at the Neurological and Physical Abilitation (NAPA) Center in Los Angeles. In January 2020, he got to try out Trexo therapy for the first time.
“(The Trexo) had software that was able to tell you how much of the weight bearing he did on his own, how much the machine does for him if he initiated the movement himself, how many steps he took … they’re able to take the data from the first day and compare it to Day 15,” Jennifer said. “It was a quite a bit of progress.”
“All the health benefits that come with it: increased flexibility, stronger bones, strength, endurance, all those things are just really, quite beneficial,” she said.
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The Trexo machine the Davis family is looking to buy for their son would come with all the same software and benefits as the one at the NAPA Center. Jennifer estimated the apparatus would cost $30,000, but inflation and accommodations for Vance’s size priced the machine closer to $40,000.
While the price tag presents a challenge, the Davis family is thankful for the generosity of donors who already have chipped in.
“Vance said he just wants to say thank you to everyone that’s trying to help him walk again,” Jennifer said.
Pueblo Chieftain reporter James Bartolo can be reached by email at [email protected].