Sherryl cares to serve as KS&A’s webmaster and ListServe administrator because…

I can honestly say that without KS&A, I do not know what my son’s life would be like now. When my son was prenatally diagnosed in the fall of 1997, the members of the organization, in particular, Melissa Aylstock, provided me with hope that my son could have a bright future and that gave me the strength and courage to do what I knew in my heart was right – to have my son and help him and other children like him to live full and happy lives.

I live in Northern Virginia with my husband, David, and two sons, Nicholas (46,XY; age 11) and Christopher (47,XXY; age 8.5). I have been working in the computer information technology field for over 20 years, currently as the Web Manger of a network of 9 servers and 12 websites, as well as providing Technical Support for computer hardware and software for a group of 10 at The Organization of American States, an international organization in Washington, D.C.

I began my volunteer activities with KS&A in February of 1999 when Dr. Carole Samango-Sprouse asked me if I would be interested in managing the KS&A website. I had taken my son, Christopher to see Dr. Sprouse for an evaluation at 9 months. During Chris’ first evaluation at 4 months, Dr. Sprouse and I had talked about where I was employed and what I did. So when Melissa Aylstock was looking for someone to take over the management of the KS&A website from her husband, Dr. Sprouse asked if I was interested. I contacted Melissa, and shortly after that, I started managing the KS&A web site.

My involvement with KS&A didn’t stop with managing the website. In 1999, I also attended the first of 6 KS&A National Conferences in which I have participated. Within a year of volunteering for KS&A, Melissa asked if I would be willing to speak with parents who had recently received a prenatal diagnosis. Also, in August of 2000, Melissa asked me to speak at the NIH Conference on Klinefelter Syndrome. I spoke about the early intervention services (Physical and Speech Therapies) my son had received since the age of 9 months and what a difference they had made. I have also helped out at the conferences in any way that was needed, such as moderating the Pediatrics Support Group at the 2002 Seattle Conference, and most recently, coordinating the catering at the Philadelphia Conference this past October. In December 2002, I was elected to the Board of Directors of KS&A. In the summer of 2003, I represented KS&A at the American Occupational Therapists Association Conference held in Washington, D.C., The Endocrine Society Meeting in Philadelphia, PA and the Genetic Alliance Conference in Arlington, VA. During the summer of 2004, I also took on the responsibility of managing the Support Lists that are hosted by KS&A, as well as handling some of the pediatric support calls.

In addition to putting my web and support skills to good use, I have also learned a lot more about the genetic condition that my son has. In the process of learning more about the condition, I realized that I needed to do more to help others who were not so fortunate as I to have Dr. Sprouse (and an excellent support system in my family) nearby. I also found that by talking with other parents and clinicians about the effects of the extra X chromosome, I was not only able to help them understand the condition, but also to help my son because those conversations invariably sparked ideas on ways to help Chris with the difficulties he had. Outreach and Education has been key to helping the parents and young boys with this condition. I am happy to “give back” to the organization that has given me so much.

• Return to Sherryl’s biography…