Derek Montcalvo

Derek Montecalvo

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.  â€œWe 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.