Family Stories - Children 3-6
"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 that everything was going to be okay."
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 son, 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 (FPWRC) 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 that there are no limits. In only their third year, the Johnsons have raised over $300,000, provided funding for FPWR research projects, and introduced over 1000 people to PWS and FPWR. The scope of their events has expanded to include galas, garage sales, poinsettia sales, walkathons, volleyball tournaments and much more. Beginning with one walkathon for family and friends, they now intend to raise "millions of dollars" for FPWR!
Meanwhile, Dante, now age 4, remains the delight of their lives, along with his brother, Denzel, age 3. "We take it one day at a time and tackle each challenge as it comes," says Tanya. "So far so good! Dante is running and jumping, singing and dancing. 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 and, eventually, a cure for PWS.
A child with all of these things going for him needs just one more thing: treatment and a cure for PWS. With continued funding for PWS research through FPWR, that day will come, and not a moment too soon!