NCAA News Archive - 2005

« back to 2005 | Back to NCAA News Archive Index

Make-A-Wish effort has a personal effect


Apr 25, 2005 11:46:17 AM

By Jay Moran
University of Bridgeport

I hope that nobody else is forced to experience what our family has gone through for the last five years. And yet, I wish that everybody could share how we have found perfect love out of the depths of despair.

April 20 marked the sixth birthday of our daughter Julia. She is the youngest of our four children. She loves her family, music, school and dancing with her mom and dad. She loves to laugh, and -- like so many 6-year-olds -- gives great hugs and kisses. She is a big fan of apple juice and Cheerios.

What makes Julia different is that she suffers from Hurler Syndrome, a terrible genetic disorder that results in mental retardation, blindness, debilitating muscle stiffness, heart problems, breathing problems and -- ultimately -- death. I know that any parent who reads that list of symptoms feels the pain that my wife and I endure every day.

Julia was diagnosed with Hurler Syndrome at the age of 15 months. She recently has received treatments that have softened some of the worst symptoms. Still, my wife Patty and I have no illusions about the ultimate outcome. We live every day on an emotional roller coaster, and we have experienced more stressful and frightening moments than we care to remember. Through the bad times and the good, Julia has been our rock, teaching us so much about life and bringing love to everybody she meets.

Last summer, the Make-A-Wish Foundation made it possible for Julia, Patty, Kristen, Elizabeth, Jamie and me to go to Disney World. It was a tremendous opportunity for our entire family, which has lived this experience, to relax and have fun for a week. The employees and volunteers at Disney and at Give Kids the World, where we stayed, gave us first-class treatment every day. They were awesome. I'm sure that our week at Disney World was similar to what other Make-A-Wish beneficiaries have experienced, but it was a once-in-a-lifetime event for us.

With all of that in mind, you can only imagine the gratitude and pride that I felt at the 2005 NCAA Convention in Dallas when I saw our Division II Student-Athlete Advisory Committee raising money for Make-A-Wish. Our student-athletes were passing the plate in meeting rooms and collecting spare change as delegates showed up for large events such as the delegates reception. As I watched their energy, I came to understand how they raised about $50,000 last year and will probably raise more than $100,000 this year.

Those of us who work every day with student-athletes know that they are the best of the best. For every kid who gets in trouble, there are 100 more who are doing everything the right way. This fund-raising effort is just another example.

At the Convention, I made a special trip before the start of the business session to the front of the room where the Division II SAAC was to be seated. I thanked them< on the most personal of levels for their hard work and efforts to support Make-A-Wish. I wanted them to know first-hand that many people appreciate the time and effort that they have put in to supporting such a great organization. I applauded loudest of all when NCAA President Myles Brand recognized Division II's Make-A-Wish efforts during his State of the Association speech.

Then I returned to Connecticut, where I met with the state Make-A-Wish office to discuss how our student-athletes can get involved with Make-A-Wish for the 2005-06 academic year. When our student-athletes heard about the plan, they were enthusiastic at the opportunity to be involved, because that's the way student-athletes are.

There is some hope for other victims of Hurler Syndrome. More effort is being made to diagnose the illness earlier, and bone-marrow and stem-cell transplants appear to offer some afflicted children the chance at a better and longer life.

As for Julia, we have gained some positive results with enzyme-replacement therapy. Even though this disease has left her with many physical disabilities, her hope and love continue to inspire all who have had the privilege of knowing her.

It fills me with pride to know that we can count Division II's student-athletes, especially student-athletes in the Northeast, among her best friends.

Jay Moran is director of athletics at the University of Bridgeport. For more information on the Division II Make-A-Wish project, visit www1.ncaa.org/membership/membership_svcs/saac/d2/make_a_wish/maw_info?ObjectID=26233&ViewMode=0&PreviewState=0,or contact Kim Ford at kford@ncaa.org.


© 2010 The National Collegiate Athletic Association
Terms and Conditions | Privacy Policy