Look At Us, a nonprofit that provides emotional support, financial aid, and reconstructive surgeries for children with craniofacial anomalies, is bringing hope and medical assistance to families around the world. Founder Rob Williams conceived of the organization in 2002, when his son was born with a severe craniofacial difference called Treacher Collins syndrome but was otherwise healthy and “normal.” Williams immediately recognized a void in organizations that could help with his son’s situation, which has involved nine surgeries so far.
“A lot of organizations are feel-good, family-support organizations, but they do not fund surgeries,” said Williams, who lives in Summerland and works by day as a realtor. “The ones that do are associated with a certain hospital and tell you where to go.”
So Williams formed Look At Us to focus on craniofacial surgeries and medical devices. According to Williams, around one in 500 children are born with craniofacial anomalies, which include cleft jaws, breathing and hearing problems, and even developmental issues. The necessary surgeries required to fix these anomalies can cost hundreds of thousands of dollars. Look At Us helps by contributing financial assistance, donating medical devices to children, and speaking at different locations around the world to bring light to the issue.
Williams launched Look At Us in December 2014 and hopes to provide 12 transformative surgeries and donate 12 hearing aids in the first year alone. “We’ve done jaw surgeries, donated hearing aids, built ear canals,” said Williams, who’s worked with families in Vietnam, Bangladesh, Australia, and California so far. “It’s not just helping one kid at a time,” he said. “Our business model is to go into a community where we focus on a child and we work as a team, raising awareness about the issue.”
Because of that, Williams considers his organization an alliance. “We work with top surgeons who can do specific types of surgery that insurance companies don’t cover,” he said. “The families we help are encouraged to become a larger part of our alliance to help the community.”
Through Look At Us, families gain access to a specialized support network, which even includes a contract psychologist. The organization also negotiates to find the best possible care at the lowest possible price, but fundraising requires constant attention. “We fundraise through speeches, speaking to local groups, grant writing, and normal solicitations,” said Williams. “We bring our families into it, and they create fundraisers on behalf of Look At Us. We do raise awareness and give hope, but we also have solid results.”
Currently, Look At Us is working with the Veits, a Santa Barbara family whose 6-year-old son, Julian, was born without external ears, a congenital birth defect that resulted in hearing loss. In order to fix his inner and outer ears and restore his hearing, Julian will have to undergo three surgeries over the course of roughly a year, costing more than $100,000. “The surgery would be adding everything: ear canal, ear drums,” said Williams, explaining that it’s a three-step process and the first procedure being this July. “Only two surgeons in the U.S. can even do it.”
On Sunday, May 31, 4-7 p.m., Look At Us will host a fundraising event for Julian at Cabana Home in Santa Barbara, the first of what Williams hopes will be many. Since working with Look At Us, the Veits and Julian have met other families, like the Williams, who are in similar circumstances and long to help. “Look At Us gives families who just don’t know where to start both psychological and financial help,” said Williams, “and it helps them realize their kids are ‘normal.’”
Julian’s father, Dan Veit, is already overwhelmed by the impact of Look At Us. “Words can’t express the gratitude that we feel,” he said. “We are just starting this journey and know that there is a long road ahead, but we have a tremendous sphere of support and look forward to our future astronaut winemaker with the big ears he wants.”