If you’re like many of us, the first time you heard of or were aware of craniofacial disorders came from Cher’s film “Mask.” The true story of teenager Rocky Dennis and his mother. His appearance was best described as ‘lionitis.’ You may have also seen children with this condition on television from time to time. Craniofacial disorder actually falls under many different terms and manifests into different syndromes. The definition of the disorder refers to an abnormality of the face and/or the head. The differences can result from abnormal growth patterns of the skull or face, which involves bones and soft tissue. The condition may include disfigurement (lion-like looking head, in some cases) brought on by birth defect, trauma or disease. One of the most common conditions falls under this category: cleft lip and or palate. This condition consists of a separation of the parts of the lip or root of the mouth. A cleft lip is the separation of the two sides of the lip and often includes the bones of the maxilla and or the upper gum. This occurs when the two sides of the palate do not fuse together as the unborn baby develops.
Many of those who suffer from this condition are children. The Children’s Craniofacial Association is the main place parents and children can turn for guidance, support, medical information and medical procedures. I myself am a member of their organization. I frequently receive a newsletter in the mail full of inspiring stories, updated information, programs, fundraising, etc. One of the most popular events in the calendar year is Cher’s Annual Family Retreat. Cher is the honorary chairperson of the CCA – Children’s Craniofacial Association. She became an active member soon after her role in the film “Mask.” It is essentially a place where these kids and their families can go on vacation without the stares and judgments they are subjected to every day. It is also a reminder that they are not ‘the only ones’ dealing with this disease. That is one of the most major and important components parents discover when first finding out their baby has this disorder. It is very important to hear positive things, to talk to people that have been and are going through what they are about to endure. Support is a wonderful thing on so many levels.
At this time of year especially, Christmas Eve, it seemed appropriate for me to share this information. The most important thing a writer can do is inform. These children are really no different than our own kids. They play, the laugh, they ask Santa for presents (mostly for their parents) and they dream. They have incredible senses of humor, they bare a resilience that brightly shines from their faces, and they truly love life. I don’t believe they see themselves as all that different or ‘deformed’ from their own counterparts. They’re just kids. After all, that’s the way it should be.
The medical procedures and operations usually begin before the child is old enough to walk and talk. Multiple trips to the hospital follow frequently over the years as they and their bodies grow. The surgeries are difficult for the children but most of the burden falls upon their parents. It’s hard for us to imagine that sinkable feeling being told there is something wrong with your child. But like their kids, they are also fighters and survivors, battling each and every obstacle together, slaying each and every dragon that crosses their path. Their stories are tragic, heartwarming and inspiring. They will bring you to tears as well as lift your spirits higher than you ever thought possible.
The following are a list of many of the syndromes that fall under the craniofacial criteria:
cleft lip and/or palate
hemifacial microsomia/goldenhar syndrome
pierre robin syndrome
Information on all of these conditions can be found on the CCA website: http://www.ccakids.com/
Here you will find valuable information about treatments, doctors, insurance questions, facilities in your area, volunteer work, retreats, etc. Most of all you will find inspiration, hope and love. Isn’t that really what it’s all about?