To the editor:
The third annual Out Run Rett 5K was held last Saturday in New Suffolk. Out Run Rett raises funds for promising research involving gene therapy and honors two young Southold residents, Maren and Rachel, who suffer from the disorder.
The third time was a charm and we were gifted a beautiful spring day of sun that matched the glow of hope that a cure may be close. There are so many sponsors and participants to thank, but I wanted to especially thank our family, the Finnerty, McKenna and McCallion families, and Amy Prager for all the support. A huge thanks to Southold Town police and the New Suffolk community. We are so grateful.
Maren was born in 2011. She was simply perfect. Like so many mothers before me, I remember just soaking her in; that sweet smell of a newborn mingled with the dreams of what she would do, see, and be filled me to the brim. Then came a phone call in December 2012. There were a bunch of technical terms I’ve come to know like the back of my hand, but at the time were garbled nonsense because the news — that my sweet perfect child had a disorder that would prevent her from walking, talking and using her hands, and put her at risk of medical complications and everything that comes with not being able to communicate — was too loud.
The one thing I do remember, though, was asking the geneticist again and again would my daughter have any friends, because all the things she could not be were not as important as visions of life alone and watching from the sidelines. Not surprisingly, the geneticist could not answer that question, but I am happy to say I know the answer. Thank you to so many who made the Out Run Rett 5K a success. While the money from the race means so much to the research, the gift of friendship is invaluable. We are lucky to live in this community.
Lena DeSantis, Mattituck
Photo caption: Racers set to begin the 5K last weekend. (Courtesy photo)