Make it Happen!
Even though kids with craniofacial deformities face the daunting prospect of undergoing numerous surgeries during childhood, even though they look different from all of the other kids in class, and even though they have to deal with teasing and social isolation on a daily basis, the children whom we have had the pleasure of treating have proven to be the most resilient, brave, and inspirational kids we have ever met.
Perhaps the most surprising observation I have had over the years is that no matter what difficulties these boys and girls have to face in life, ultimately they just want to be kids. They don’t want to be defined by their appearance, but by who they are inside. They want to play, they want to laugh, they want to have fun, and they want to enjoy the things their bothers and sisters and friends enjoy, just like all of our kids.
What they often lack, however, is access to the experiences that can enrich their lives and make them feel like one of the gang.
Make It Happen! sprang from our desire to never say no to any child with a facial deformity who wanted to experience the same things that other kids get to experience. It was heartbreaking to hear from some of our patients that their wishes were turned down by other charitable organizations because their diseases were not terminal. So we have taken a pragmatic approach to our patients’ wish lists: if there’s something that one of our patients wants that seems out of reach, just Make It Happen!
But we can’t do it alone, making dreams come true is a team effort. Read about some of our patients below and see if you can help…
Tiffany was born with oromandibular limb dysgenesis syndrome, a rare birth defect. She was born with no legs, only one arm, and no lower jaw. She has undergone eight major reconstructive surgeries to rebuild her jaw, all before the age of ten. She can now breathe, eat, and speak normally, but there’s one thing she has told us has been missing in her life: she was never able to ride a bicycle, like all of the other kids in the neighborhood. But she was determined. It didn’t matter that she was born without legs, she was going to learn how to ride a bike if she got the chance, and nothing was going to stop her. In 2014, when Tiffany was 12 years old, her parents discovered a special kind of bicycle made for disabled children, one that Tiffany could learn to ride! But it was financially inaccessible. When Tiffany’s mom told us about the bike, we knew we had to make this happen.
On the morning of August 30, 2014, we surprised Tiffany with a knock on her door. When she came outside she was shocked to see a brand new shining red bike made that she could ride--the same special bike Tiffany and her family had learned about but couldn’t afford! Thanks to the tremendous generosity of Dena Harte and her team at City National Bank, and in partnership with the non-profit SoCal Trykers, an organization that provides bikes to kids in need, we made it happen!
By the time Arianna was 2 months old she had already undergone three major life-saving surgeries to treat life-threatening birth defects of her heart and spinal cord. She was also born with chromosomal abnormalities and a cleft palate, which have resulted in developmental and speech delays and difficulty with speech. We began treating her when she was 6 years old and have been seeing her ever since. Her visits are a joy to us, in large part due to her amazing smile, which is never dampened by her paraplegia, her heart disease, her facial deformity or any other challenge she faces. I’m not sure who coined the phrase, but Arianna lights up the room when she’s in it. Now that she’s 12, despite the fact that she has suffered through more in her first decade of life than most of us will ever has to deal with, she wants… what else?… to see ONE DIRECTION! This seems like an impossible task, but we are determined to make it happen!
Odra may not be a child per se, but she is a child at heart and has certainly dedicated her life to taking care of some of the most needy children on earth. Odra is the director of operating room services at the Herman Pedro Obras Sociales Hospital in Antigua, Guatemala. She spent her childhood growing up in the hospital, where her mother was the operating room director for decades. When her mother took ill and had to retire, Odra, having earned her nursing degree, picked up where she left off without missing a step. Believe me it is no exaggeration when I say that Odra works 365 days a year overseeing the care of children with cleft lip and palate, ear deformities, and craniofacial birth defects, as well as supervising the hospital’s orphanage for developmentally delayed children and adults and their infant nutritional program. This woman is a rock, with a heart of gold. How do I know these things? I spend 2-3 weeks out of the year operating in Odra’s operating rooms! And it was during one of these trips that Odra revealed to me her one true weakness: Enrique Iglesias! While she is focused day in and day out on nurturing the lives of children who truly have nowhere else to turn, she allows herself every once in a while the indulgence of imagining how wonderful it would be to meet Enrique, or even just to receive an autographed photo from him. (Who wouldn’t? The guy is a dream.) When I asked how she would feel about going to one of his concerts or even meeting him she burst out laughing: she commented that that sort of thing doesn’t happen in her world to people like her. Really? We have to make this happen!