Parenting tips to navigate a rare disease diagnosis

From tough decisions and awkward questions from strangers to crash courses in medical advocacy, parents of children with rare medical conditions are often navigating the unknown.

“Never let a diagnosis define your child. Children are incredibly resilient. They always find a way to adapt and overcome things and Cameron does not allow his condition to hold him back at all. He overcomes every obstacle that comes his way,” said Courtney McGaughran.

Cameron is eight years old and has achondroplasia, the most common form of dwarfism. Courtney hopes that sharing her family’s story brings awareness and connection for parents and caregivers also navigating the unexpected.

“I think as parents we have a tendency to compare our children to other children and it definitely can be a thief of joy. I try to remind myself that every child is different and every child grows and learns at their own pace,” said Courtney.

For more local resources about achondroplasia, visit CHOP’s website here.