I know first hand that a child with a craniofacial anomaly confronts such overwhelming physical and emotional challenges. I was born with a congenital craniofacial anomaly, and Robert, my 13 year-old son, has Treacher Collins Syndrome. He came into this world with severely underdeveloped facial bones, down-slanting eyes, malformed ears and significant hearing loss. To date Robert, who’s an otherwise healthy, happy and active 7th grader, has had 10 reconstructive surgeries.
Having a kid with a craniofacial difference is scary, traumatic and confusing. Expensive too. Thankfully, my family has weathered the storm – at least so far – and the experience has driven me to give back and help others in similar circumstances.
Look At Us Alliance, a 501(c)3 non-profit, launched in January of 2014. We provide education, support, counsel and care to families of children born with craniofacial issues. We’re advocates; we fund surgeries domestically and abroad; we supply medical devices – like Cochlear BAHA hearing aids – to kids in need; and we help affected families navigate the seemingly uncertain roads ahead of them. Best of all, we let boys and girls – just like Robert – know that they too will live normal and productive lives.
Our relationship with Cochlear has been an important part of our success. Their generous support and state of the art devices allow us to affect positive change to children across the globe.
Do it scared! Basically it means don’t let fear stop you from accomplishing your goals. A few years ago I could never of imagined speaking in front of hundreds of people, sharing my story or leading a global organization. Stepping through the fear and doing something that scares you builds confidence. Everything you want in life is just outside your comfort zone.
Look At Us is transforming lives all over the world and we would love them to join our alliance! Please contact us to discuss ways in which we can work together to assist children who otherwise will go without care.
Check out our website at lookatus.org