It is difficult to understand the experience of parents of special needs children. Unless you have received that phone call from a doctor explaining to you that your child will live a life far different than you imagined when you first found out you were pregnant, it's hard to know what those tears mean. If you haven't endured the long, sleepless nights, the ongoing hospital visits, the minimal amount of dating time, then it's nearly impossible to wrap your mind around what they feel. If you haven't stood over your little one's crib, feeling an amazing love for that little baby, but feeling utterly helpless because you want to do something -- anything -- to make him or her better, well then it can be hard to know what to do when your friend is in that position.
When their lifelong friend, Jim Vershbow and his wife Pam found out that their firstborn son Patrick had Fragile X Syndrome, Jon Pressman, Steve Savarese, Billy Rome and later Jimmy Marks and Scott Katz wanted to do something. It wasn't clear, however, what that something should be.
Vershbow describes how after growing up with these guys -- going to high school at Buckingham Browne and Nichols (BB&N) in Cambridge, MA with most of them, and spending summers in Naples, ME at Camp Skylemar with many of them -- they all imagined that they would all be married with kids who would grow up together as year-round best friends just like they were.
After Jim and Pam found out that Patrick's life would be very different, they knew that their lives as parents would be different as well. When Jim describes that period after getting "the call" from the doctor, he uses words and phrases like "lost" and "rough patch." They knew very little about Fragile X at the time so they went to libraries and spoke with physicians and researchers to learn more.
Fragile X Syndrome (FXS) is a neurodevelopmental disorder that affects approximately 100,000 men and women in the U.S. As the largest known cause of autism, it can impair social function, mental cognition, speech and language development, functional independence, and cause social anxiety and seizure disorders. It is diagnosed when infants do not reach certain benchmarks as they grow and mature, and then it is confirmed through a further series of tests. Whether one receives a mild or more severe diagnosis of Fragile X, it is certainly life altering for the individual and her or his family.
With this major life change, and many years of care giving ahead of him, Jim says that he retreated away from his former life as a teacher and as a coach and ultimately retreated away from his friends. His friends wanted to do something to support, stand with, and somehow love their brother Jim and his family, but they weren't quite sure what to do.
The idea came while the group was out to dinner with their spouses. What could they do that would bring their friend Jim back out, support Patrick, raise awareness about Fragile X and help raise funds to further research around improving treatment for and a cure of FXS?
The old friends decided to hold a 3-on-3 Basketball tournament.
On Saturday, June the 4, the 15th Annual Patrick's PALS 3-on-3 Basketball Tournament will be held in Cambridge, MA. Teams comprised of high school kids, college-aged players, or older folks armed with Advil and knee braces, will come to play in games that, while being for charity, have the intensity of NBA Playoff Basketball. More than thirty teams will be in attendance and will play in a double elimination tournament at BB&N, the Alma Mater of its founders.
This road to the final four and the Patrick's PALS Trophy is even more interesting when former college and professional players show up on teams. I can personally remember the excitement (and by excitement I mean frustration) of playing former Boston Celtic, Walter McCarty, and having him block my shot, only to turn around a minute later and shoot a near half-court 3 pointer over my teammate who was about 1 foot his junior. I also remember the joy in reliving the glory days one year by making it to the quarter finals.
In between games, players and guests are encouraged to bid on the items present in the silent auction that the organizers hold each year. From autographed sports paraphernalia, to vacations and event tickets, the auction adds another fun dimension to this great day.
Each year, Patrick's PALS brings in nearly $40,000 which they donate to FRAXA, an organization founded in 1994 by parents of Fragile X kids who wanted to be a part of more than a support group, that works to further research around treatment and the finding of a cure to Fragile X.
FRAXA has granted more than $20 million to researchers and real progress is being made. Medical News Today reports , Seaside Therapeutics published a study in the journal ACS Chemical Neuroscience. They described the article as a:
" discussion of the mGluR theory of fragile X syndrome (which is) based on research suggesting that inhibition of group I mGluR signaling reduces protein synthesis and, in turn, may correct the cognitive and behavioral phenotypes associated with Fragile X syndrome."So what does a bunch of sweaty hoopsters playing in a high school gym have to do with this? The nearly half a million dollars that Jim and Pam Vershbow and their friends have raised through this basketball tournament have helped to make research like this possible.
Though researchers have not found a cure for Fragile X yet, they are not that far off. Katie Clapp, the president of FRAXA, wrote in a newsletter:
"We are more than half way toward the cure."
Today Patrick is 18 and Jim sees the presence of his son in his life as being "a blessing." Jim has shared this blessing with all of us by extending an invitation to care for Patrick in our efforts to help find a cure for Fragile X.
I think more than anything, I am struck by how much a group of regular people can do. None of these guys are celebrities. None are particularly wealthy. But, they have worked very hard to make a difference and they have raised a significant amount of money for research.
They have also provided a simple model for how average people can make a difference in the lives of their friends and in the lives of future people born with Fragile X. So, if you're in the Boston area on June 4, stop by the tournament. Play if you can! You can also donate something to be a part of the solution.
Also remember that we can all make a difference for whatever cause tugs at our hearts, whether it's by organizing a benefit tournament, gala dinners, silent auctions, educating others or just being there for a friend -- like a bunch of guys outside of Boston have.
Follow Charles Howard on Twitter: www.twitter.com/Chaz_Howard