“Happy 30th Birthday to you, Keegan Johnson, and, by the way, your son has Prader–Willi syndrome!”
Although the news wasn’t delivered in song, that was essentially what was presented to Keegan and Tanya Johnson on the day they planned to celebrate Keegan’s first 30 years of life. A jolt like that requires more than a cake with 30 candles to overcome.
“We listened to our geneticist, along with eight other medical staff, tell us that Dante would always be hungry and have major cognitive and developmental delays,” remembered Tanya. “That same night, we sat in the hospital and decided that everything would be okay as long as we chose to believe in a bright future for our firstborn son.”
The Johnsons are not the kind of family to take news like this sitting down. Determined to do everything in their power to help Dante reach his maximum potential, they began raising money for research.
“It was worth all the planning and hard work,” Tanya said with a smile. “I will never forget how I felt when our drumroll was followed by, ‘We raised a total of $50,000 for PWS research!’ From that day on, I knew there was no such thing as limits!”
As they continued their journey, the Johnsons attended an FPWR conference in Kentucky, where they met “the most amazing, like-minded people and their beautiful children.” Keegan and Tanya felt that FPWR was the organization that could truly make a difference in Dante’s life through its commitment to advancing research.
“They inspired us to start FPWR Canada and expand the vision of research internationally,” said Keegan. “It is our hope that we can reach out to families all over the world and unite all PWS organizations to come together and eliminate the challenges of PWS.”
The Johnsons are living proof that anything can happen when you believe. Over the years, they have raised significant funds for research, supported FPWR projects, and launched the One SMALL Step walk program, which has gone on to inspire families and communities worldwide to host events in support of PWS research.
Meanwhile, Dante remains the delight of their lives, along with his brother, Denzel. “We take it one day at a time and tackle each challenge as it comes,” says Tanya. “So far, so good! Dante is active, loves sports and music, and makes us laugh every day. He is happy and social, and everyone who meets him falls in love instantly!”
Earlier PWS research has already made a meaningful difference in Dante’s life and in the lives of many others. The addition of human growth hormone to the PWS treatment protocol brought dramatic improvements: increased height, stronger muscles, improved metabolism, increased bone density, and healthier weight distribution. FPWR aims to build on this progress by uncovering even more treatment options for individuals with PWS.
“Together, with the help of the PWS community, we can eliminate the challenges of PWS one step at a time, if we choose to believe!” said Tanya Johnson.
