The story reached Tara Gable, mom of another little girl with Kniest named, Piper. At the time of the book's release, Piper was about 11 months old. I remember that age well with Kiki. It was time filled with great confusion and lots of fear. Each little milestone Kiki hit brought moments of immense joy through all of the confusion. I knew at a deep level what Tara and her family were going through. Tara saw an article about our Katie experience and commented. I immediately commented back, letting her know we did all of this for people like her and Piper. We connected via the Internet and watching Piper reach milestone that Kiki did has allowed me to relive those joyful moments all over again.
Piper is a doll with a huge amount of spirit. A friend once wrote of Kiki that she was part of "club gregarious." I would say Piper is part of that club as well. Tara and her husband, Matt, are amazing with her and all of their girls. Piper has three older sisters.
While connecting online is a wonderful opportunity we might not have had were it 20 years earlier, being able to meet in person adds a whole different level to the support system, especially when we are talking about something as rare as Kniest. Immediately, it seems, we parents bond over our shared experiences. So, the Far From the Tree experience came full circle for me and Kiki when we met Tara and Piper and their whole family for dinner as they were passing through our area on vacation. It was a brief but special meeting for me and for Kiki. It all goes back to what Andrew says about the communities that emerge from these differences, that there is a connection we never expected, that we can have so much in common with people we've never met, so much so that it feels instantly like we've never not known each other. The support works both ways. Sure, we've walked the path Tara and Piper have yet to walk, but I get to I feel support from knowing them as well, from seeing yet another amazing kid with Kniest conquer the world. Piper reminds me of Kiki in so many ways. It was a joy meeting the whole family. I have Andrew to thank for this. This is truly the most amazing outcome of our Far From the Tree journey.