At age 15, progressing muscular dystrophy has robbed Ulises Elizarraras Perez of the use of his legs and largely stilled his arms.
But Uli, as he’s known, has an undimmed zest for life and a loving bond with his parents, who will do whatever it takes – even move to another country ─ to make his life fulfilling.
And that is how his family came to be living in a rental home in The Dalles, while relatives look after their own home back in Guanajuato, Mexico.
About a year ago, during what started as a long family visit to The Dalles – his parents were named godparents to a local child ─ Uli announced one day that he would love to learn English.
And so they stayed. He enrolled in The Dalles Middle School, and his dad, Jose Elizarraras Cabrera, got a job. He left behind his job as supervisor at a textile factory in Mexico.
Their unassuming blue rental is not only a symbol of one couple’s determination to help their child in any way they can.
It is also a symbol of a community’s willingness to help its own: A large crew of volunteers just finished building a ramp at the house to accommodate Uli’s new wheelchair.
The ramp came into being through the work of a constellation of helpers. Sharon Steele, a physical therapist with the school district, knew that Uli had a new motorized wheelchair given to him by Shriners Hospital for Children in Portland after recent spinal stabilization surgery.
The new power wheelchair not only stabilizes his torso but gives him freedom to move about.
But the 300-pound wheelchair was too heavy for his dad to lift into the house, so Uli was stuck in his regular wheelchair inside, unable to move about freely.
“He’s very independent,” his father said through a translator, community health worker Yary Ruiz of the North Central Public Health District. “He likes to be free, with certain limitations, just so he can access outside without someone else. The ramp is freedom for Uli to go outside.”
Steele was trying to track down some help in building a ramp, and was assisted by Lori Treichel, an RN with the public health district, and Ruiz, who both do in-home visits to Uli.
They landed upon “Fix It for HIM,” a community outreach ministry of Calvary Baptist Church, which provides services such as home repair, for those in need.
Bill Hamilton runs “Fix It for HIM,” and said Uli’s ramp, at 41 feet, is the biggest and most challenging project the ministry has yet undertaken. Over a dozen people worked over five days to complete the ramp, which was finished April 5. The project went over budget, and the ministry welcomes donations to cover those costs, Hamilton said.
Hamilton said of Uli’s family, “They’re great people. They’re a great family. It’s a joy to work with them. They’re very inviting.”
Also lending a critical assist was Home Depot, which not only provided five employees, free of charge, to work on the project, but also donated over $1,000 in supplies, Steele said.
Jary Snodgrass, special education director for the school district, also helped with the ramp project. “Uli had the biggest smile on his face because this is the first time he’s had mobility at home,” Snodgrass said.
Uli’s health problems started appearing when he was about three, his dad said. He began falling down and couldn’t use his hands properly.
A visit to the doctor confirmed that the genetic malady had once again befallen the family. Uli’s mother, Araceli Perez Mares, has a brother with muscular dystrophy as well.
With the news, Araceli quit her job in local government, where she was secretary to the city manager.
Uli was able to walk until he was eight years and six months old.
His father recounted that Uli’s loss of the ability to walk “was a really difficult moment for the family.
“It was really hard to get through the fact he wasn’t able to walk and not be able to do many things anymore and it was hard to cope and it was hard for Ulises to cope,” his father said.
Asked to describe Uli, his father said, “He’s a very happy person. He’s very fun, he loves music, he’s very sweet and loving.”
At night, his parents have to help him shift in bed. Every time his mom comes in the room to assist him, his first words are: “I love you mom.”
Uli is a typical teenager who gets noncommittal when asked to describe himself. “No se,” he replies.
He’s at The Dalles High School now, and while it’s a pain to actually get into the building – he’s dropped off at the east end, but has to motor around the entire block to get into a level westside entrance, at the shop building – his favorite subject is science.
He’s taking a web design class, and recently he created a web page about himself as a class assignment.
While the family stayed in part to satisfy Uli’s adventurousness in wanting to immerse in another culture and learn another language, his parents also saw a chance for better medical care for their son.
He gets services not only from the public health district and OneCommunity Health, but also from Shriners Hospital.
They’ve found The Dalles to be a peaceful, quiet, friendly town.
“In light of his condition, they saw it would be better off here, just a better life,” Ruiz translated.
“The expectation of him living is a lot higher here than it would be in Mexico.”
Uli’s parents are in awe of their son.
“The things they admire more about Uli is he has a huge capability. He amazes them with how strong he is and the strength he has as well, because he has overcome a lot of difficult times through his condition, so they admire that,” Ruiz said.
They were also shocked to hear that Uli would like to get a job this summer. They support the notion, wanting him to know what it’s like to work for the things you want.
His father is also very moved by the excellent care his son has received medically from so many people, and he offered “a huge thank you” to everyone who helped build the ramp. “From the bottom of their heart, they appreciate everyone that participate in this project,” Ruiz said.
They gathered on their newly finished ramp recently for a photo.
Asked if the family would stay in The Dalles permanently, Uli’s dad gave the only answer that would occur to either parent: “It’s up to Uli. It’s his well-being that matters. Wherever he will be well.”
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