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If you would like to see a video of a parents' experience of a Emilith, who will be 3 in January, was born with soft tissue tumors of the lower face and neck that caused difficulty with eating and breathing. She has undergone three surgeries. This busy toddler loves movies, Power Puff Girls, board games (especially Lucky Ducks), books and dirt. She's into dirt all the time, says her mom, Ana. Blake, 14, was born with no eyes or nasal airways and with multiple skull and facial deformities. He has undergone 37 operations and will probably require additional surgery as an adult. This outgoing 8th grader is on the honor roll and enjoys Tae Kwan Do (he and his family just graduated to purple belt) and ham radio. He can talk to the world now, his mom, Kathy, jokingly laments. He does not have a shy bone in his body. Maria Jean, 5, has Goldenhar syndrome, in which her left jaw was not fully developed at birth. Since the condition resulted in a very narrow air passage, Maria Jean had a tracheotomy tube implanted as a newborn. The tracheotomy tube was removed this summer. Major surgery to correct her jaw will have to wait until she weighs 60 pounds (she's at just 25 now), but she responds well to the inevitable curiosity of other children. When kindergarten classmates ask, "Why do you smile crooked?", Maria Jean tells them, "I was born special." Diana, 5, was born with craniosynostosis, an abnormal head shape caused by the premature fusing of bones in the skull. Diana underwent surgery at 10 months and wore a corrective helmet over the next six months to reshape the skull. She is not expected to need further surgery. Diana likes dancing and singing and is particularly passionate about puzzles. She's very persistent, says her mother, Rocio. She'll stay with something until she's finished. Helena, 6, was born with bicoronal craniosynostosis. Bones in her skull had fused prematurely, leaving her brain with limited room to grow and eyes spaced too far apart for normal vision. She has undergone multiple operations, including cranial expansion and the repositioning of her eyes. Helena is an imaginative child with a variety of interests, including drawing, dancing, cheerleading, dressing up and making videos (she and her sister, Emma, played karate experts in a recent performance). Andy, 15, is a brain cancer survivor who has undergone facial reconstruction to correct the aftereffect of multiple brain surgeries and radiation treatments. He has had one major reconstructive surgery involving implants in various areas of his face. He will eventually need further surgery. Andy is a high school freshman who likes Game Boy, riding his motorcycle, cooking, and tearing things apart to see how they work,according to his mother, Cindy. Brett, 11, was born with a cleft palate, atresia (absence of external ear canal) and microtia (which means small ear) and has undergone 13 mouth and ear surgeries. Brett enjoys playing Pop Warner football and Xbox games, and is a Star Wars and Lego fanatic,according to his mom, Michelle. David, 12, was born with Crouzon's syndrome, a premature closing of the skull. He has undergone three operations and may need further surgery when he is older. David likes fishing, camping, Legos and spending time with younger children. He's also initiated a pop tab collection project in his hometown of Bagdad, Arizona, to benefit Ronald McDonald House Charities. Ryan, 16, has Sathre-Chotzen syndrome, in which the soft spot in the head is already closed at birth. He has undergone three major facial surgeries. A high school junior, Ryan likes video games, collecting Yu-Gi-Oh! trading cards, and playing paintball with his cousin. He is looking forward to driving. Nick, 16, was born with Goldenhar syndrome, which resulted in a facial deformity on his right side. He has had three operations, and will have a facial reconstruction surgery next year. Nick is a high school junior who likes softball, rollerblading and spending time with his friends. |


