The parents of 7-year-old Elke Kliewer of Fort Collins didn’t dare dream about their daughter someday needing a wheelchair-accessible bathroom.
When Elke (pronounced Ehl-kuh) was 2 months old, doctors told Anton and Stephanie Kliewer that their little girl had Spinal Muscular Atrophy (SMA) Type 1, a muscle wasting disease like Lou Gehrig’s Disease, or ALS.
“More than a shock,” Anton said. “It’s not something you’re ever expecting or prepared for.”
Stephanie said: “When we got her diagnosis, SMA was the No. 1 genetic killer of children under 2, and 98 percent of kids didn’t make it until 2. And she’s 7.”
As the Kliewer (pronounced Cleaver) family moved from a third-floor apartment to a house and then to their bigger current house, Elke grew but has not been able to take a real shower for years. That changed just weeks before Christmas.
“So, we didn’t actually plan for a bigger child or a pre-teen or like an elementary school child,” Stephanie said. “These are things that we really didn’t think would happen, so it’s pretty cool to live your fantasy in real time. That’s pretty great.”
1 in 10,000 children affected
The rare genetic disorder is caused by double gene deletion, meaning both of Elke’s parents are carriers of the disease and each pregnancy of theirs has a 1-in-4 chance of having a child with SMA. Elke’s younger brother, 6-year-old A.J., is not affected.
As Elke grew, the need for hard floors to roll equipment, a bigger room and a wheelchair accessible shower was passed on to CM Cares, a three-credit elective class in Colorado State University’s Department of Construction Management in the College of Health and Human Sciences.
One of three projects that was delayed by COVID, the effort was completed in early December 2021.
“What we’re doing here is a three-room renovation for a girl in our community named Elke,” said Cayden Fish, a December 2022 graduate. “She’s not very capable of moving, and she requires a lot of special accommodations, so we were happy to come out and do this for her.”
Student team grows close to the Kliewer family
A team of three student workers — Fish, May 2022 graduate Eryn Dominguez and December 2021 graduate Joshua Houser — did all the work outside of some subcontractor portions.
But Elke picked the paint color in her room; she calls it “Sleepy Blue.”
“I’m going to have a new room, and I’m going to have a new blanket with a mermaid on it,” Elke said shortly before the project was completed. “The walls are going to be an under-the-sea world.”
The team has tried to work without bothering the family, but at the same time has forged a bond through months-long, late-night work that went well past the time needed for class credit.
“They’re incredible,” Stephanie said. “They have worked so hard. They’re here until late at night. They’re here early in the morning. They’re here. They have given so much of themselves. I’m genuinely heartbroken that they’re leaving.”
Anton is a CSU employee who is contracted out to the Cooperative Institute for Research in the Atmosphere, which does weather research and data simulation.
He said he had a few ideas for the house, but not the full renovation that turned a bathroom, bedroom and old office space into a nurses’ station, medicine cabinet, bigger bedroom, hardwood floors and a full bathroom with roll-in shower and wheelchair charging port.
Hitting ‘curveballs’ out of the park
“I just thought maybe we could do a couple mods that will help us out, and they took it over and just knocked it out of the ballpark,” he said. “They’re the best. They’re incredibly conscientious, and also their professionalism, like they don’t cut corners or think that’s close enough to being OK. The workmanship is just out of this world.”
Fish said the project was not without its curveballs, including turning a window into a temporary door for access and then back into a window.
“It’s been a learning experience for our whole team,” said Fish, who has interned with Swinerton, the key sponsor for this CM Cares project. “From demo, to framing the walls to dealing with MEP (mechanical, electrical, plumbing) work to putting up the drywall, the flooring, the baseboards, doing the paints. We’ve had to learn as we go. I couldn’t be more proud of these two (Dominguez and Houser).”
Dominguez signed up specifically for this project. “Meeting the family, having a relationship with the family has been amazing,” she said. “Rewarding for sure.”
Houser, the project manager, said the experience has been so much more than running a job site and hands-on construction. “It’s awesome,” he said. “At the end of the day, it feels really good to help out a family like this family. It’s a special opportunity to use your skills to help someone out.”
The space can change again as needed
The renovated space also can grow with Elke, who needs a ventilator.
“Eventually, with luck, she’ll get too big for us to lift, and so now her room is wide enough to where we can put in a mechanical lift as well,” Stephanie said. “And then having everything in one space with rolling access makes those different transitions to different chairs easier.
“Having a child with a disability is definitely like an intensifier, so your lows are lower, but man your highs are higher — like being able to appreciate that your kid can be in a shower, that’s a high that most parents just don’t feel.” – Stephanie Kliewer, Elke’s mother
“Having a child with a disability is definitely like an intensifier, so your lows are lower, but man your highs are higher — like being able to appreciate that your kid can be in a shower, that’s a high that most parents just don’t feel.”
All three CM Cares teams presented their projects on Dec. 14. Elke and her family were there as guests just a few days after she got to see her new space.
“Oh my gosh, it was so wonderful.” Stephanie said. “She was so excited.”
The student team found out first-hand that this renovation project did not just alter walls and floors, it changed lives. “Being able to do something and dedicate your time and labor has been awesome, to do something beyond yourself,” Houser said of Elke.
And now this mermaid finally gets to play in the water.
Other CM Cares projects
The Anjoli Project involved re-configuring and remodeling a mobile home space for Anjoli Yanez, who was diagnosed with hydrocephaly as an infant. Anjoli lives with her grandmother Judy in a home which previously included great challenges for both. Project team members Brandee Morris, Aidan Blackman, Taylor Crothers and Cody Krueger worked to create an accessible shower space and more access to the sink and toilet. That included new walls, an accordion door, storage area and exhaust fan. The project makes life in the home easier and safer. “The CM Cares Anjoli project has been an awesome project where construction management students have been able to help make a family’s life better,” Krueger said. “We remodeled Anjoli’s bathroom so it would be easier and safer for her family and her to be in the bathroom. We were able to use skills and knowledge we have gained in our other classes to complete this project.”
The Brigden Project involved team members Marissa Kiefer, Peter Hodgkins, A.J. Buel, Oscar Flores and Kaylyn Kilmer remodeling a bathroom to allow wheelchair access and a small addition for a walk-in closet for Brigden Frederick, who lives with cerebral palsy. The extra space near an existing window gives Brigden’s mother more storage space and allows Brigden more independence to use the now-widened bathroom area. “This project is an amazing opportunity that we were given to use our skills and knowledge to give back to our community,” Kiefer said. “It was a privilege to work with the family and our project team to assist Bridgen with his independence and help an amazing family.”