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Beneski Boys!

Posted Feb 17 2013 4:41pm

As you have probably heard, I am running the Boston Marathon with Team Hole in the Wall and my goal is to raise $10,000 for The Hole in the Wall Gang Camp. I have known for awhile that I wanted to run this marathon in honor of the Beneski boys....really, in honor of the Beneski family--Tim, Cara  and their  four AWESOME boys, all four of whom have attended The Hole in the Wall Gang Camp. I first met this wonderful family at Camp a few years back when Tim spoke about their experience with Camp, about the boys, their illnesses and about how special Camp is to them all. When trying to decide how to start telling about this beautiful and inspiring family, I asked Tim and Cara if there was anything they would like to say that would help me in sharing their story...I thought that I should share what Tim had to say because I can't imagine that anything I have to say could be more meaningful than this...........
The Beneski boys are now teenagers (almost!).  Chancey is sixteen, Jake and Seamus are thirteen, and Eamon is twelve.  Despite the fact that the Beneskis now reside on the Big Island of Hawai’i (we all have difficulties in this life!), there is no question that their formative years in Connecticut shaped the boys in so many ways.
And it is certainly true that one of the greatest assets to growing up in Connecticut was their access to the Hole in the Wall Gang Camp, “the greatest place on earth,” as the boys have often said.
When Jake and Seamus were born, May 10, 1999, they were six weeks early, but seemed pretty healthy.  However, in their first year of life, they each had over 70 ear infections, along with pneumonia, sinus infections, and other problems, and it became clear that something was wrong.  Despite stronger and stronger antibiotics, nothing could keep the infections at bay, so the family and the wonderful staff at Connecticut Children’s Medical Center came together to find out what was going on. 
It turned out that Jake and Seamus had an immune deficiency.  There are multiple complications that go along with it.  The diagnosis that comes closest to their set of issues is “Common Variable Immune Deficiency,” CVID.  Eamon, who was born on August 22, 2000, also has CVID.  Chancey is healthy. 
Every cloud has its silver lining, however, and for the Beneskis, that lining, in the form of The Hole in the Wall Gang Camp is pure gold!  The twins began attending camp in their first year of eligibility, when they were seven years old.  Chancey attended Sibs Week, and Eamon joined in two years later (curse that August birthday!)

The Beneskis have been blessed in many ways over the years, but the sustained connection with HITWGC has been the most wonderful gift in the world.  As campers, they were able to redefine “normal” in a way that made them capable, confident, and eager to try new experiences that they could not have imagined before camp.  They have friendships with campers, counselors, and friends of camp that have extended into all aspects of their lives.  Camp is not a one-week adventure; it is a life-changing experience, and the Beneskis have truly been enriched by all that camp has to offer.

The benefits of association with HITWGC are not confined to the three campers, either.  The whole Beneski family, Mom Cara, Dad Tim, and big brother Chancey have all enjoyed the opportunities that HITWGC provides.  Camp has given respite, companionship, and a community who really understands what it means to have chronically ill children in the family.  It is impossible to overstate the importance of the Hole in the Wall Gang Camp in the life of this family. 
One of the important cultural traditions in Hawai’i is ‘ohana, family.  Nothing could have prepared the Beneskis better for understanding the importance of ‘ohanathat extends far beyond the nuclear family better than the HITWGC family. 

Wow, huh? In the coming days, I will be sharing more about my reasons for wanting to dedicate my first Boston Marathon to this lovely family! 

You can also check out this parent testimonial by Tim and Cara on the Hole in the Wall Gang Camp website and learn more about Camp there as well at:
http://www.teamholeinthewall.org/page.aspx?pid=1096

I will leave you today with the last paragraph from Tim's last email to me---
Pam, the Beneski family loves you! Thanks for all you do for us, but more than that, for Camp, "the greatest place on earth!"With warmest aloha,Tim
Reading this made me so proud and honored to be running with THITW.....it almost made me forget how scared I am about running the Boston Marathon in 2 months!!!! Oh, and about Tim saying that Camp is "the greatest place on earth.".......keep in mind that they now live in HAWAII!!!!!!

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