Dear Friends and Family,
Our son, Stephen, was born with a rare complex genetic condition called Cardio-Facio-Cutaneous (CFC) syndrome. Cardio-Facio-Cutaneous syndrome is a very rare genetic condition present at birth affecting approximately 300 – 500 individuals in the world (one out of every 810,000 births). It is a multi-system disorder ranging in severity affecting many organs. Common medical issues associated with CFC include heart defects, growth problems, vision impairment, hearing impairment, and skin problems. Other medical issues that come to the forefront are orthopedic in nature including lack of mobility, osteoporosis and scoliosis; also gastrointestinal issues such as feeding problems and reflux often results in the need for a feeding tube for nutrition. While there is a wide spectrum of severity in CFC syndrome, most individuals will have some degree of learning difficulty and intellectual disability. Close to 50% of the individuals have a seizure disorder. As you can see, Stephen faces multiple challenges on a daily basis.
Raising Stephen has been one of life’s greatest challenges and greatest joys. Through the years, we have relied heavily on the love and support of our wonderful family and friends. You will never know how much we appreciate the many ways you have all helped us.
We have also received help from Cardio-Facio-Cutaneous (CFC) International. Through this organization, we have been fortunate enough to meet many other families whose lives have been touched by CFC syndrome. The opportunity to share experiences, ask questions and receive support has been invaluable. CFC’s newsletter publications have kept us informed and offered hope and encouragement when we needed it most. CFC International hosts a website, private family computer list serve and Facebook site. CFC International funded the establishment of their own DNA Biobank, which was responsible for the 2006 CFC gene discoveries! CFC has done so much for us; we feel it is our turn to give something back.
CFC International will host its family conference July 31-August 4, 2013. The cost of this conference is over $35,000. Families have the opportunity to receive free medical consultations with CFC syndrome experts, attend informative workshops, learn of promising research and, most importantly, meet other families who share the extraordinary experience of caring for a child with CFC syndrome.
Our family is committed to raising $5000 through personal and business donations to support this event.
Please consider a donation to CFC International. Any assistance you can contribute is tremendously appreciated. We appreciate your thoughtful consideration and look forward to sharing with you how your gift made the conference an unforgettable event for so many families.
With our most heartfelt thanks,
Susie and Ernie Ames
1363 S. Oxalis Ave. Orlando, FL 32807
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