Evolving from frightened to grateful, a family boosts a project to bring speech therapy into homes and schools.
Connor Wright inspired support for the development of a speech therapy app.
By Christine Bush
When the doctor handed Kelly Mathey her baby boy, the first thing she noticed was an adorable dimple. But then the doctor gave her the unexpected news that her son had a bilateral cleft lip and palate. "I had never heard of the condition before," Mathey says. "We didn't have an inkling of a birth defect even though we had ultrasounds. The fear of the unknown left me feeling terrified."
Staff members at the hospital didn't have a lot of experience with cleft patients and tried to help the family find experts familiar with the condition. Mathey's concern grew as Connor had trouble eating. "He wasn't able to create suction, so nursing or feeding him with a bottle wasn't an option," Mathey says. "I was pumping breast milk and using a syringe to feed him, but he would often gag and not get the nutrients."
As Connor's family diligently tried to find the right care, feeding trouble continued and he lost weight. When Connor was 3 weeks old, his family found help at Shriners Hospitals for Children—Chicago.
Staff members at Shriners taught the family how to feed Connor, and then the team quickly moved to get ahead of potential issues. "They knew I wasn't thinking about speech therapy at that point, but they also knew how important it was to get him on the right path." The team educated Mathey and helped her connect with a local speech therapist. He started speech therapy at 1 month old, and today, 8 years later, Mathey says because of quick intervention at Shriners, it's hard to tell he has a speech impediment.
Early in Connor's treatment, Mathey and her family started a golf tournament to raise money for the hospital and the dedicated people who helped Connor. After successful tournaments, the family considered applying the community's generosity to a specific hospital program. "I wanted to show the community something tangible," Mathey says. "I wanted supporters to know we're doing something great with their money."
Mathey learned the cleft lip and palate team along with a computer programming company, were developing a speech therapy app. Connor's family chose to dedicate golf tournament proceeds to help fund the Cleft Palate Articulation Therapy app development.
Amy Morgan, a speech language pathologist at Shriners, worked with Connor and helped develop the app. "One goal of the treatment plan is to provide resources for those who take care of kids," Morgan says. "The app gives patients the ability to have speech therapy anywhere, and they're using the same material as their speech pathologist."
The app offers tutorial content for parents and speech therapists. The tutorials familiarize them with the type of challenge the child may have, and what they can do to get the most out of the therapy process. "The app has the specifics we've learned over the years," Morgan says. "It's great for parents, and puts them in the driver seat for practicing and helping the child improve speech."
Connor's school district is approved as a pilot for the app. Getting the therapy app on devices in schools fulfills part of Mathey's vision. "I wanted something a teacher could bring into the classroom to give kids," she says. "Making the app accessible helps families who can't afford a private speech therapist." The donations from the golf tournament inspired by Connor Wright and the Masonic Family Health Foundation were enough to fund the app's creation and support its release at no cost.
Connor recently underwent reconstructive surgery and expects to have one or two more and then take a break until he's done growing. That time frame is unpredictable. Mathey says the Shriners' team guides them through each step making his treatment predictable.
Connor's family didn't expect to leave a legacy, but that's what happened when they helped make the speech therapy app a reality. "It makes me feel happy and accomplished," Connor says. "I get to share my life with wonderful families who need the new technology."
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