When I got the in utero diagnosis of my son’s XXY in 1995, I had feelings of despair, confusion, frustration, and sadness. My husband and I went to the public library in Manhattan to explore KS information, per the geneticist’s recommendation. We were traumatized by the photographs and misinformation.
Dr. Adler, my OB/GYN was very consoling and empathetic. He gave me Melissa Aylstock’s information and told me she was fighting for her son and other KS kids through KS & Associates, the organization she founded.
Melissa was sweet, kind, concerned and very responsive to my plea for help! Back then it was ‘long distance’ phone calls to California from NJ. We were on the phone for hours. Melissa sent me an overnight package with photographs of her son, whom she had self-diagnosed, along with photos of other KS guys. They looked NOTHING even close to the pictures we had seen at the library. In fact, they were handsome guys with no physical signs of anything unusual.
I had the good fortune of meeting Melissa and her son at the 1995 KS&A conference. A couple dozen people attended that event. I witnessed the growth of AXYS, (KS&A was renamed AXYS in 2014) when I attended the 2019 conference with nearly 400 participants: medical professionals, parents, and individuals with X and Y variations, who traveled from all over the US, South America and even Europe to attend. Attending the conference was not only nostalgic for me as I reflected back on 1995, but also a sign of hope that awareness, support and education are on the rise.
I raised my son alone, well, along with a few good nannies and sitters. My son is a smart, handsome, caring, kind, person with drive and passion. As my son struggles with KS related neurocognitive issues, I continue to look for answers while guiding him along the way to independence.
My involvement with AXYS is driven by not only my need to help others, but a moral obligation to do like Melissa did: sincerely give back to others, to give hope to parents not sure of the outcome, listen and empathize with families, provide references or referrals when needed and most of all, to help spread awareness, support and education about X and Y variations.