My brother, Kyle, was born with a very rare condition called Nablus Syndrome. There are less than 15 documented cases in the world. It is a microdeletion of the chromosome 8q22 and is characterized as a mask-like facial appearance along with other distinct malformations of the body.
As Kyle’s older sister, I’ve watched him overcome so many medical and emotional challenges throughout his youth and develop into a remarkable young man. I may be the elder sister, yet he has taught me so much. I watched Kyle grow up dependent on his trach and vent to breathe, endure countless surgeries, undergo hours of doctors and specialists visits, and deal with the emotional stress of life that comes with having a facial difference. It has all given me a unique perspective on life. And an unwavering admiration for my brother.
Kyle has taught me that, no matter what you look like on the outside, it’s what’s on the inside that matters. The strength Kyle has and the confidence he exudes, despite his unique look, is truly amazing. He shows me every day that anything is possible.
There are times when kids – and adults – have shied away from Kyle, or simply stare at him incessantly, because of the way he looks. It’s their loss not getting to know him, because, once you do, you realize just how smart he is and fun to be around. Not to mention how passionate he is about sports!
Kyle is an inspiration to me and so many others. I see firsthand the impact he has had on our own family and the positive impact he has had – and continues to have – on every person he meets.
“Kyle shows me every day that anything is possible.” – Erin
If you are a craniofacial patient or a family member and wish to join a Virtual Support Group, please email Dina Zuckerberg, Director of Family Programs, at Dina@myFace.org.