The story of Bob
Below article from Express Scripts HUB in 2017. David will be graduating from Purdue University May 2020 with a degree in statistics. He is a manager on the Purdue men’s basketball team and we have enjoyed travelling around the Big Ten to watch games he works.
Wish Granted: My Son’s Story
When we found out on April 23rd,1998 that our 3-month-old son David had cystic fibrosis (CF), it turned our world upside down. We only knew that CF was one of those things people raised money for like muscular dystrophy and March of Dimes. At the time, the data readily available said life expectancy for children with CF was 14 to 18 years.
My wife, Kristin, and I were not prepared to handle the probability that our child was going to die before us. We were determined to do everything we could to enable David to have a “normal” life. We spent countless hours when he was a child providing therapy, making sure he took appropriate medications and battling insurance.
Fortunately our efforts and prayers for his health have been productive so far, for the science and medication for his CF has stayed a step ahead of his condition. He is one of 3,000 patients worldwide who benefit from the first drug to target the CF gene. We get the medication, along with support, from Accredo. He has maintained his health with a rigorous routine of therapy (an hour each day) and medication, which includes taking more than 30 pills a day.
We were advised when David was in seventh grade that he qualified for a “wish” through Make-A-Wish Foundation since he has a life-threatening medical condition. David does not like special attention, and his diligent therapy has kept him relatively healthy for someone with his condition. Only his closest friends knew he had CF prior to his junior year in high school. He has kept an active lifestyle and excels in his high school’s varsity lacrosse team, where he leads the running drills during practice.
David put off making his wish because he felt others needed it more. As his birthday approached, he was reminded that he needed to make his wish prior to turning 18. He was encouraged by Make-A-Wish to not feel guilty and he could look at it as an award for his diligence to manage his condition and stay healthy. He finally decided on his wish ― He wanted to meet actor and filmmaker James Franco.
In January, Make-A-Wish arranged for our family to be on location for an upcoming film to meet James Franco and his brother Dave. The whirlwind experience is another story, but the wish included a flight to Los Angeles, transportation in a limo and a star home tour. David used his provided incidental excursion money to see the LA Clippers, go to a comedy club and take a Warner Bros. Studio tour.
Like many other parents with special needs, we have had to make many stressful career, home, and school sacrifices to promote our child’s well-being. Make-A-Wish provided us with a stress-free getaway and offered our son a once-in-a-lifetime experience that will remain a happy memory in our hearts.