myFace patient Kyle and his family

The O’Reillys

Kyle came into our lives 16 years ago on a beautiful, sunny day. Twelve hours later, at midnight, the doc-tors wheeled his incubator into my room so my husband and I could finally see him before they transported him via ambulance to the NICU @ NYU. I cried, thinking “he was perfect, so why are they taking him?” though I knew he would be cared for by an exceptional team of doctors at the IRPS. To see your tiny baby hooked up to so many tubes, wires and machines just takes your breath away and breaks your heart wide open. Born with Nablus syndrome, a rare genetic condition involving a deletion at chromosome 8q22.1, Kyle presents with a mask-like facial appearance, along with small eyes, recessed jaw, broad nose, malformed ears and upswept eyebrows and hairline.Heʼs been in the OR over 20 times for various surgeries and procedures, and has undergone hour upon hour of intense therapies. Despite it all, thereʼs this incredibly sweet boy who is patient and tolerant, very shy, yet very witty. Kyle is kind, compassionate and intuitive. He is a sports fanatic and a math whiz in addition to being an avid Yankee fan and someone who pushes you to be a better person. We’ve now entered the teenage years. How diffucult it is to maneuver through these years for any teenager, but for a teenager with a facial difference itʼs excruciatingly painful. Itʼs heartbreaking as a parent to watch Kyle navigate these
consistently rough waters, as if you thought your heart couldn’t be torn open any further and then it does. The whispers, the stares, the shunning: itʼs all so painful to watch him experience this. Enter myFace. I had discovered that the newly rebranded NFFR had increased their fundraising efforts to implement both peer and parent support groups. A wave of relief, hope, and excitement.

“…we are so grateful to be a part of the myFace family.”

came over me knowing that my husband and I could seek support during these teenage years and so we decided to get involved. We signed on as The Kyleman Team and began fundraising for Races for Faces. This was our third year participating and we continue to show up strong with over 40 friends and family members clad in our homemade tie-dyes! Itʼs a day where Kyle can let his guard down, not worry about any stares or whispers but instead bask in the love and support that surrounds him. Itʼs also a wonderful feeling knowing that the money generated will help Kyle navigate the world around him with myFaceʼs psychosocial support and the tools and confidence developed by the support groups. Itʼs so exciting to see all the wonderful work myFace has been do-ing and the programs they are generating to help these kids cope with having a craniofacial difference. Not only does myFace have a vision but it has a huge heart and we are so grateful to be a part of the myFace family.


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