One of the first to respond remembers that first conversation: “We talked for over an hour. I couldn’t believe how alike our initial experiences were, especially about how we were told our sons would fail to thrive and die before the age of two. My son was several years older than hers, so I told her what she could expect and what medicines and the like were needed. After I hung up from that conversation, I sat down and cried tears. It was as if I’d been living in a pressure cooker for years. All alone. When I read that letter and when I called Kaye, it was as if the pressure finally began to escape. A big load had been lifted from my shoulders. I was no longer alone. I had someone else to talk to about about my son. All this time, I thought my son might be the only case in existence.”
Through the conversations she’d had with other families, Kaye realized that there was a need to educate the healthcare and education community and to help families find each other for mutual support.
The next year, she launched the first Lowe’s Syndrome Family Newsletter (later named On the Beam). Three times a year she took to her typewriter and published a newsletter. Families wrote letters about their sons and professionals wrote articles helping to explain the syndrome and its needed treatments.
The membership roster grew and it became clear that we needed to do more as far as educating the medical community as well as families. Compiling up-to-date and accurate information on Lowe syndrome, she produced a document that was sent to professional pediatric ophthalmologists, genetic counselors, children’s hospitals, and other professionals from whom families might seek assistance. Then, in 1986 a few families met in Chicago and founded the Lowe’s Syndrome Association. In 1994 the name was changed to Lowe Syndrome Association.