We Chose to Believe in a Bright Future for Our Son

Tanya and Keegan Johnson“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 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 get over.

“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. “It was the same night that 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 first born son.”

The Johnsons are not the kind of family to take things like this sitting down. In an effort to do everything in their power to help Dante to reach his maximum potential, they began to raise money for research.

“It was worth all the planning and hard work,” smiled Tanya. “I will never forget how I felt on Aug 20th, 2005 when our drum roll 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!’

The Johnsons along with their baby boy, Dante, soon went to their first 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 group that would truly make a difference in Dante’s life through the support of 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 past 9 years, the Johnsons have raised over $1 Million, provided funding for FPWR research projects, created a video and together with the help of many PWS families won a video contest that earned FPWR a trip to the White House. Friends and PWS families were inspired to run events such as galas, golf tournaments, One SMALL Step walks in 65 cities world-wide and much more.

Meanwhile, Dante, now age 9, remains the delight of their lives, along with his brother, Denzel, age 8 (rising basketball star). “We take it one day at a time and tackle each challenge as it comes,” says Tanya.  “So far so good!  Dante is reading, he is active and loves sports and music and makes us laugh every day!  He is happy and social, and everyone who comes into contact with him is sure to fall in love instantly!”

One benefit of earlier PWS research has already paid off for Dante and for many individuals with PWS. The addition of human growth hormone to the PWS treatment protocol made a dramatic improvement in his life, not only by increasing his height, but by increasing muscle mass, metabolism, and bone density, while also improving weight distribution. FPWR intends to improve the lives of individuals like Dante even further by uncovering other treatment options.

“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.

Do you have a story of hope to share with others about your experiences with PWS? Send it to us!

Understanding PWS - Slide Deck

Topics: Stories of Hope

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.