A New York Times Top 10 Book of 2011The Boy in the Moon is Ian Brown’s powerful, honest, and emotionally complicated memoir of raising his son, Walker–one of only a few hundred people worldwide who live with an extremely rare genetic mutation. … Google Books
Ian Brown’s son, Walker, was born with a genetic mutation so rare that doctors call it an orphan syndrome: perhaps one hundred people around the world live with it. In his moving account, The Boy in the Moon: A Father’s Search for His Disabled Son, Brown describes Walker’s life and how his family help him live it.
The Canadian journalist and broadcaster joined Hilary Harper for a conversation about disability, expectation, power and control. They discuss non-verbal communication, Brown’s vision for an integrated high care community, and what it takes to rediscover your own needs after focussing completely on another’s.
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 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. There are several characteristic facial features that are evident in CFC syndrome that may overlap with other conditions, particularly Noonan Syndrome (NS) and Costello Syndrome (CS). Therefore, accurate diagnosis is essential for proper medical management. How common is CFC? There are over 100 individuals reported in the literature. It is estimated that there are perhaps 200-300 individuals worldwide.