The catalyst for Look At Us dates back to the summer of 2002, when my son Robert was born with severe craniofacial differences. What should’ve been the most joyous occasion became shrouded by worry, confusion and – truth be told – fear the moment an obstetrics nurse placed our precious newborn into my hands early on a July morning. When I saw for the first time Robert’s underdeveloped facial bones, down-slanting eyes and malformed ears – the telltale signs of Treacher Collins Syndrome – I turned to the doctor and said, “look at him,” desperate for reassurance that he was going to be okay. She refused. “LOOK AT HIM,” I repeated, an anguished father pleading for the doctor’s care – a diagnosis, perhaps some words of comfort.
But she wouldn’t. Instead the OB/GYN hurried out of the operating room, avoiding eye contact and offering a patronizing “his color is fine, he’s doing what normal babies do.”
Never had I felt so alone. Yet never had I felt so determined. My child shouldn’t have been ignored, and I was resolute that no other child like Robert would be. Twelve years later, “look at him” became Look At Us, a 501(c)(3) organization singularly focused on the physical and emotional well being of children and young adults with craniofacial disorders due to birth anomaly or injury.
Since Robert’s birth, I have been steadfast in my quest to provide him with the best medical care available and to raise him as a completely normal child, which he is. To date, Robert – who’s an otherwise healthy, happy and active 6th grader – has endured nine reconstructive surgeries, and the journey has led me to discover the world’s top medical professionals and ancillary providers, to learn all about hearing aids, and to understand the psychological impact that craniofacial issues invariably have on an affected kid and his or her family.
No doubt, I’ve come to know first hand that having a son – or daughter – with a craniofacial anomaly is traumatic. Expensive too. The good news is that our collective experience – including travels to remote areas around the world volunteering for those less fortunate and sponsoring surgical missions – has shaped the purpose of Look At Us: to provide education, support, counsel and care to families touched by craniofacial differences. We’re advocates; we fund surgeries domestically and abroad; we supply medical devices – like hearing aids – to kids in need; and we help affected families navigate the seemingly uncertain roads ahead of them.
Best of all, Look At Us is a hub of inspiration, empowerment and hope. We let boys and girls – just like Robert – know that they too will live normal and productive lives. And for their families, Look At Us is a welcomed source of faith that – in most every case – everything will be alright. That’s something I wish that OB/GYN had the courage to look up and explain to me so many years ago.
Rob Williams – September 2014