In April of 2022, Mike and Katie received the news no parent wants to hear. Their 15 month old, Collin, was diagnosed with a genetic disease so rare, there’s not even a name for it. The doctor simply called it MED13L, for the type of single gene mutation. The doctor explained children with MED13L have intellectual disabilities, severe language delays, seizures, heart defects and low muscle tone. There have been less than 1,000 cases reported. Currently, there are no treatments or cures.