02/26/2018
MyTown2Go, Derby2go, and Wichita2go.com is donating 10% of all food sales this Wednesday February 28th to CFC International. This years theme for National Rare Disease Day is “Research”. These donations will help the experts with their research to discover more about CFC Syndrome and hopefully one day a cure!
The exact incidence of CFC syndrome is unknown, but one report suggests that it can occur in approximately 1 in 810,000 individuals.
Brady was diagnosed with CFC when he was 1 1/2 years old. He is now 8, doesn’t swallow (G-Tube dependent for nutrients), learned to walk when he was 5, and has Physical Therapy, Occupational Therapy, and Speech Therapy every week. Cognitively, he is at his age, but still faces many developmental delays. He is our little hero and keeps surprising us at every turn by surpassing all goals set for him. His laugh is contagious and he enjoys everyday to the fullest. He is always willing to give a Big Hero Six fist bump, enjoys hanging around his brothers, and loves his dogs BoBo and Fred. There is no cure for CFC, nor a book to learn everything about the syndrome. There is a community of parents and caregivers that share experiences and knowledge to help each other out to keep learning about the syndrome.
What is Cardiofaciocutaneous (CFC) syndrome?
CFC syndrome is a rare genetic condition that typically affects the heart (cardio-), facial features (facio-) and skin (cutaneous). It is seen with equal frequency in males and females and across all ethnic groups. Children with CFC syndrome may have certain features that suggest the diagnosis, such as relatively large head size, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or scaly skin, and short stature. Most will also have a heart defect. While there is a wide spectrum of severity in CFC syndrome, most individuals will have some degree of learning difficulty and developmental delay. To learn more about CFC, click the link below:
http://cfcsyndrome.org
Every lit bit helps! Please order from MyTown2Go this Wednesday to support National Rare Disease Day to help us with our goal!