I'm glad to have the chance to share my perspective as a father of a child affected by 1p36 Deletion Syndrome. Often there are humorous things to share or useful experiences that I think might help others. So I share them here.
One of the things I have zero experience with and I hope I never do, is the loss of a child who has lived with 1p36 Deletion Syndrome. However, this is a tragedy that others have been through and some brave souls have been kind enough to share their emotions in order to strengthen the rest of us.
This brings me to Ashlyn Horry, an energetic 17 year old with 1p36 Deletion Syndrome, who I had the privilege of meeting last summer at the 1p36 Deletion Support & Awareness Conference in Salt Lake City. Ashlyn, her mother, Keva, and her brother joined us for the weekend and it was great to get to know them. They're another family going through many of the same experiences we've had at home. With one major twist. Ashlyn's father is retired NBA star Robert Horry.
This has put their family in the media spotlight through the years and they've handled it well. They founded the Ashlyn Horry Foundation, which helps children like Ashlyn and my little Whitney. But then last week, sweet Ashlyn passed away. Amid the media attention, her father wrote her a letter that has been published online. Robert's letter struck a chord with me, knowing we've walked a similar road with our daughters. If you have a few minutes, it's worth your time.
And if you feel so inclined, please make a contribution to the Ashlyn Horry Foundation or 1p36 Deletion Support & Awareness. Both organizations are working to improve the lives of children like Ashlyn and Whitney every day. Thank you. And my best to Ashlyn's family. My family will be praying for yours at this difficult time.