Back At It For AXYS 2017
It has been nearly sixteen years since our son Ben was born, and almost four years since we learned of his diagnosis of Klinefelter Syndrome, a genetic disorder in which males receive an extra copy of the “X” chromosome. It was then that we discovered AXYS, an organization that strives to inform and support individuals and families with X and Y chromosome variations.
After years of misdiagnoses, emotional, behavioral, social, and academic challenges, we had finally found others who understood our son and his individual needs.
We were able to spend a week at the eXtraordinarY Kids’ Clinic in Colorado, and with the help of Dr. Tartaglia’s team, were able to discover how Ben learns in order to get him the help he needs at school and at home. We started a support group in Kansas, and later in Minnesota.
We watched as our Ben demonstrated so much progress. Our little one, who did not walk until 16 months, became a high school soccer goalie. Our boy, who once stood no higher than our kitchen table, is now 6 foot 3. Our son, who had difficulty learning how to ride a bike, is now driving a car. Ben, who once refused to establish eye contact or initiate conversation, now seeks out opportunities to meet up with friends. And a boy who once had difficulty holding a pencil, is now filling out job applications.
Of course, there are still difficulties and help is needed along the way. But we are so thankful every day for our friends, family, and for AXYS. That is why I am choosing AXYS to support for my Hundred Hole Hike this year.
Upon diagnosis, individuals and families with X and Y chromosome disorders often have limited information in the time they need it the most. When Ben was diagnosed, our pediatrician, his psychologist and psychiatrist, and his teachers had never heard of Klinefelter Syndrome. Thankfully, AXYS was there to help. From providing family information kits to a full offering of webinars and conference videos, this was our primary source of knowledge.
I am participating in the Hundred Hole Hike at Ballyneal Golf Club, in Holyoke, CO, on June 19th to help support AXYS, an organization that strives to raise awareness for individuals with X and Y chromosome variations. The Hundred Hole Hike (HHH) is a national-network of golf marathons where participants plan to walk 100 or more holes of golf in one day in order to raise money for various worthwhile charitable causes. The Hundred Hole Hike includes events at some of the top golf courses in the country, including many courses listed in the Top 100 by the various golf publications. My goal is to walk and play 144 holes in a day without the use of a cart to raise money for AXYS. You can pledge an amount per hole or as a lump sum at www.hundredholehiike.com. Please support my Hike and know that your donation will go towards helping “Individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.” – individuals like our son, Ben.