Family Stories - Males
"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!
A southern law firm, advertising their services on television, uses the slogan "One call does it all." Mike and Shannon Stermel received one call on August 4, 2006, with news that all the law firms in the world working together couldn't fix.
"We received that devastating phone call and the question as to what was wrong with our precious son was answered," said Mike Stermel. "He had Prader-Willi syndrome."
Hearing those words literally knocks the wind out of most of us, but the Stermels set their sails quickly and were on the phone with Kathryn McGhee of FPWR on the first night of the diagnosis.
"I felt that I had to dive right in with FPWR," said Mike, "and I am so glad that I did."
A few months after receiving the diagnosis, the Stermels were fundraising right and left. They activated their incredible network of friends in Philadelphia and since then have held two annual "beef 'N beer" nights featuring many great prizes as well as several local comedians. They also held a tailgate party after a Phillies game, and a golf outing. The group has already raised $25,000 to support PWS research through FPWR and says that this is just the beginning.
"We're planning another golf outing, some more tailgate parties, possibly a
benefit rock concert, and what is becoming our signature event, an Annual "beef 'N beer" in November," reported Mike. "We plan to have our best prize list to date and we also intend to double our donation to FPWR in 2009!"
The Stermels both count their blessings every day and are so thankful for their dear baby Michael, now almost 3 years old. Mike reflected that they have learned more about feeding tubes, growth hormone shots, and hyperphagia than they ever dreamed-- all part of parenting in the world of PWS.
"Michael is a wonderful, beautiful, happy child," said Shannon, "and with the help of our family, friends and the FPWR family, I believe he can achieve anything!"
The Stermels, along with their trusty crew of friends and family, are helping to turn the world of PWS upside down. Their enthusiasm, optimism, and determination will move FPWR closer to its goal of eliminating the challenges of Prader-Willi syndrome through the advancement of research.
Defying the odds is one of life's greatest pleasures! The Montecalvo family knows the joy of this accomplishment through their son, Derek, but unlike some other thrills, this one has come at great cost.
"I knew during the pregnancy that something was very wrong," remembered Sharon Montecalvo as she thought back on Derek's early days. "He was so very weak, and while we addressed his needs, that simply was not enough for me." For the next two years, Sharon diligently studied medical books and journals until she found a boy with PWS who looked exactly like Derek. After further testing, Sharon and Greg finally got a diagnosis their son: Prader-Willi syndrome.
"It was a relief to put a name to his condition, but we were devastated at the news," said Sharon. "At that time, the prognosis for people with PWS was bleak, at best."
As time has passed, the family has learned to see Derek, age 19, for what he is, not for what he isn't. Derek is bright, determined, loving, and kind. "We try to live in the day, celebrating Derek's accomplishments and addressing what comes up as we need to," said Greg. "As a family, I think living with PWS has made us more compassionate, has taught us patience, and caused us to be grateful for what we do have."
Derek's accomplishments are significant. Despite the challenges of PWS, Derek has his driver's license, and graduated from high school with a 3.25 GPA, all in regular education classes. This would be a very satisfying result for any family, but considering the road blocks that PWS puts in the way, these accomplishments were fantastic!
Sharon found FPWR while doing internet research and was amazed. "At FPWR, I found a group of like-minded parents who were willing to give it their all to make the world a better place for their children, no matter what the child's abilities. Here were parents who were working to give each other information and support, all the while working to fund research to help all people with PWS."
"I had given up on the PWS community years ago," Sharon stated, "because what I had found was mostly negative. We actually had a doctor tell us not to have high expectations for Derek, that he would 'never be a doctor or a lawyer.' Imagine, telling a parent of a high-functioning three-year-old that!"
For Sharon, FPWR has given her back her energy and she now has new hope for her son's future. As with any parents, her wish for Derek is health, happiness, and love. "I have found FPWR to be a Godsend, she said. "Not only has it given my family an informative, compassionate and supportive community, I believe that the efforts of the Foundation to support PWS research will lead to healthier and happier lives for all people with PWS."
Because of the encouragement and support of the Montecalvos and families like them, FPWR has been able to accelerate PWS research and is leading the way to a better and brighter future for everyone with PWS and the families who love them.