Yesterday, we celebrated my son, Caleb’s 11th birthday. Now, birthdays are always a meaningful time for me. I look with pride at how my kids are developing and take the opportunity to shower them with love. For my son Caleb, his birthdays take on a very special meaning. I use it as an opportunity to reflect on what God has done in his life.
My son has a very rare genetic condition called Cardio-Facio-Cutaneous syndrome, or CFC syndrome for short. The condition affects those three area of the body, cardio (heart), facio (facial features), and cutaneous (skin). This is a very rare condition. In fact, there are only 100 known cases of it around the world.
Children with CFC syndrome may have certain features such as relatively large head size, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or scaly skin, and small 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. Many CFC children have difficulty swallowing food or walking.
My wife, Alice and I have been amazed at what God has done in Caleb’s life. While Caleb would rather eat softer foods, he is able to swallow his food. Caleb is able not only able to walk, but also run. Earlier this summer, he won the gold medal in the 50M run at the Illinois State Special Olympics. This is quite a miracle when you consider there were doctors who told us Caleb would never walk.
Even though he faces physical and mental challenges, he always perseveres and he always has a smile on his face. So Caleb, I don’t know if you will ever read this blog, but if you do, I want you to know that your Dad is very proud of you and he loves you very much.
For more info about CFC Syndrome, go to http://www.cfcsyndrome.org/