The Story Behind the Retreat…
Having acted in the role of the mother of a child with a craniofacial deformity in the movie, Mask, Cher was a natural choice to represent CCA. However, Cher did not become actively involved until 1990 when she joined children, adults and medical professionals in Washington, D.C. to raise public consciousness during Craniofacial Awareness Week. During that time, she developed personal friendships with children and their parents who were there to attend congressional hearings and other activities. While in DC, Cher spent every available moment with the children, even inviting them to her room without parents. Her persona was one of sincerity, warmth and genuine concern. Cher was very comfortable with the children, as well as the families. A feeling of mutual admiration soon developed among all.
On the final night of what can only be described as a series of mountaintop experiences, Cher invited everyone to her room where hours were spent visiting and sharing special concerns among craniofacial patients, their siblings and parents. One mother shared that this was the first time she and her three-year-old little boy with Goldenhar syndrome had ever spent time with others going through similar experiences. Others in the room echoed her feelings of isolation. It was then that Cher conceived the idea of a camp or retreat for the whole family. The goal of the retreat was to provide opportunities for the entire family to interact, share ideas, discuss problems and their solutions and make lifelong friendships with others having similar experiences.
Since that time we have held retreats across the nation. The retreat provides a “safe” environment for families with children who have facial differences. Held in a different location each year, this weekend event provides the opportunity for families from across the country to come together in a relaxed, fun atmosphere. Parents are not the only ones who benefit from this experience. Children at play have been overheard talking about being teased at school. One parent expressed that this experience completely turned a sibling’s very negative attitude about his sister into a very loving and accepting one. Another parent shared that one retreat weekend gave her craniofacial child more benefit than a year-and-a-half in therapy. Yet another mother whose family attends every year, referred to the retreat as a “booster shot” that helps her get through the year. Another mother said her son “blossomed while there and was more relaxed than we had seen him in a long time. He said he felt ‘normal.’ That meant more to me than a million dollars.”