Caleb

Caleb Ray is 3 years old and was born with a rare mosaic gene mutation called macrocephaly-capillary malformation (M-CM) syndrome. He has hemihyperplasia, capillary malformations covering 75% of his body, polymicrogyria, cortical dysplasia, dysgenesis of the corpus callosum, and hypotonia. He is non verbal and non-ambulatory. His future is unknown due to the rarity of the syndrome (less than 200 known diagnosed worldwide). He is the youngest of 6 kids and is the biggest blessing his family could ever imagine. He is learning to communicate by using a pecs system and sign language. Caleb is very outgoing and loves to go on any adventure and be outside. He is the sweetest, happiest, most loving little guy ever!!

~Tori, Caleb’s Mom

Macrocephaly-Capillary Malformation

Macrocephaly-capillary malformation (M-CM) is a multiple malformation syndrome causing body and head overgrowth and abnormalities of the skin, vascular system, brain, and limbs. The disorder has been attributed to a mutation in the PIK3CA gene. The mutation in M-CM is thought to occur after cell division begins and is therefore very unlikely to be inherited. A mutation that happens at this stage results in different percentages of cells being affected in
different individuals, so there is significant variability in how severely each individual is affected.

Artist: Serena Andrews