CostelloKids a parent-led support group that promotes awareness about Costello Syndrome (CS).
CostelloKids aim to gain a better understanding of Costello Syndrome and to identify the best practices in treatment for children. But most importantly they provide a support network through which families can share their own experiences and support each other through mutual understanding and experiences.
Since 2005, when the gene responsible for Costello syndrome – the HRAS gene – was identified, CostelloKids are also learning more about how each mutation on the gene affects the body. The most common mutation is G12S, which about 4/5 of all children who test positive for the Costello syndrome gene (HRAS) have. It appears that some mutations, like G12C, though much rarer, may be more or less affected.
The great news about the children is their sense of humor. Their charm and sheer resilience helps parents through the rough times.