Rob Williams recalls the day that his son, Robert, was born as one of joy and celebration, but also one of fear and confusion.
As the nurse handed him his baby boy, Williams saw that his undeveloped facial bones, eyes and ears were tell-tale signs of Treacher Collins Syndrome, a condition with which Williams himself had been diagnosed.
Turning to his son’s doctor, Williams looked for reassurance. Instead, he recalled, the doctor refused to even look at the infant, and hurried out of the room.
Twelve years later, Williams and his family have formed a nonprofit organization to ensure that other families don’t have to go through a similar experience, and that they receive the support they need to deal with a family member diagnosed with craniofacial differences like Robert’s.
Although Robert has undergone nine surgeries, he’s a healthy and happy sixth-grader and excited about the possibility of helping others through Look At Us, which specifically helps families in need pay for the surgeries and medical care of those with craniofacial abnormalities.
One of every 1,000 babies born in the United States will have a craniofacial disorder, and many children born with those types of medical conditions will have to undergo many reconstructive surgeries.
Other groups exist to provide information about the medical condition, or provide a camp experience for young people affected and the like, but Williams said no group exists to help families with one of the central hurdles of the condition: the likelihood of many costly surgeries.
“Those procedures help these people be able to breathe, eat and speak properly,” he said. “It’s not cosmetic, it’s reconstructive.”
A child born with craniofacial differences has a window of time to receive critical surgeries before their bones develop permanently, usually by age 18.
“We feel like we have a responsibility to do this,” said Williams, adding that his organization already has a handful of people, mostly young children, who are waiting for medical procedures and need the funding to move forward. Click here to make an online donation toward their care.
“It could be hundreds of thousands of dollars to get the proper care,” he said.
“Some of the top surgeons in the world don’t take insurance,” he added. “Some people can’t afford a $5,000 deductible … The need varies.”
Some cases are considered cosmetic and insurance companies refuse to pay.
“These children deserve the best medical care possible,” Williams said.
Williams, a Realtor who lives in Summerland with his wife, Jennifer, and children, Regan and Robert, said families find Look At Us from doctor referrals or through web searches.
Families fill out an application on the website, are vetted by a doctor and the organization, and also must meet income guidelines.
Some of the families Look At Us helps are among those Williams met after speaking about craniofacial differences, and sharing his family’s story at conferences across the globe.
After Skyping with a family from Australia, one mom “posted on her Facebook that she finally has some hope for her little boy,” Williams said.
“What I tell these families is that though you wouldn’t have chosen this, great things can happen,” he said. “Your child will turn you into the person you should’ve been all along.”
The journey toward starting the nonprofit organization has been a metaphorical one, as well as a physical one for the Williams family.
Noozhawk interviewed Williams last year after he returned from a surgical expedition with nonprofit ReSurge International, which conducts reconstructive surgeries on those without access to medical care. That trip took him to Bangladesh, where doctors were able to perform surgical interventions on children with severe burns, cleft palates and other life-affecting facial issues.
After that trip, Williams and his family decided to take their own family adventure across Asia together, and traveled for seven months, from January to July 2014.
The family traveled 32,000 miles during that time, volunteering at homes for trafficked children and participating in a two-week surgical trip with ReSurge International.
They traveled through Asia by bus and train, moving west and eventually ending up in Turkey, where they stayed in one of Istanbul’s oldest neighborhoods.
Williams’ children, 14 and 12, were tough travelers and “never complained,” he said. He noted that the trip was a chance for the kids to see how those in other parts of the world live.
The family had applied for nonprofit status before they left, and received word they’d been approved while they were driving back to Santa Barbara from the Los Angeles Airport, seven months after leaving.
They’re still partnering with ReSurge International, and Look At Us hopes to pick up cases that “can’t be done on a two-week surgical trip,” Williams said.
Williams said 100 percent of what people give goes to the medical care of those listed on the website.
“These are real individuals who need our help,” he said.
Click here for more information about Look At Us, or call 805.637.5699.
— Noozhawk staff writer Lara Cooper can be reached at lcooper@noozhawk.com. Follow Noozhawk on Twitter: @noozhawk, @NoozhawkNews and @NoozhawkBiz. Connect with Noozhawk on Facebook.