We’ve just returned from the latest shirt drop, which took place in Mount Laurel, New Jersey at a conference on Pallister-Killian Syndrome (PKS). The children we visited there were such beautiful, happy children, even though they experience many day-to-day challenges.
PKS can go undiagnosed, which makes it difficult for many parents to give their children the help they need. The conference was aimed at raising awareness for the condition among medical professionals and community members, and we couldn’t have been more excited to be a part of it. Kevin spoke to the parents and children about living a complete life, regardless of the ability to amass wealth or accomplish record-breaking feats.
Satisfaction in life, he said, comes with finding a way to help others, to build a legacy full of pride, and to have an impact on the world that your great-great-grandchildren will be proud of. Although the children face so many difficulties, they too can have a positive impact on the world. Through organizations like PKS Kids, these children are making others aware of their situations, which inevitably will help form an irreplaceable bond among families affected by the syndrome.
Though a PKS diagnosis may seem sad or even hopeless to many, it was striking how joyful the families were. Even the atmosphere of the conference was positive and inviting. While most conferences feature business casual attire, at least, and often drones of monotonous lectures and statistics, this was much different. Children laughed and played together as they enjoyed a good meal, while the adults chatted and compared stories about their children. Attendees were dressed in everyday outfits, and didn’t worry themselves with the politics of overly-formal introductions.
We had the opportunity to meet an incredible former fashion photographer, Rick Guidotti, whose photos have appeared everywhere from Elle Magazine to Revlon ads. As we enjoyed a delicious dinner, Rick told us about his newly found passion: photographing a new type of beauty. Beauty that can be found not just in what is considered in the modeling world to be beautiful, but in the every day person. He has dedicated the last 12 years to taking photos of people with genetic disorders all over the world, and was excited to meet and photograph the PKS kids.
His excitement was contagious, and impressed upon us an important lesson: the smallest differences in our DNA or the tiny chromosomes that makes us who we are do not dictate our happiness or beauty. Instead, they are a way for us to learn about and appreciate entirely new aspects of the world. Even the smallest of the children at the conference exuded a passion for life and a feeling not of condemnation, but of potential. They had potential to change lives through spreading awareness of PKS, and they most certainly changed our lives through the opportunity to meet and talk with them.