Shannon Grady raises funds, awareness for rare disorder

Shannon Grady and her daughter Keira McCloskey

Shannon Grady’s three-year-old daughter, Keira McCloskey, was born with a very rare genetic disorder called Alternating Hemiplegia of Childhood (AHC). It’s a condition that can cause paralysis and seizures that can last minutes, hours, even days, and is often misdiagnosed.

Keira was just 12 weeks old when her mother saw the first symptoms.

„It took five months for her to be properly diagnosed,“ said the 27-year old single mom.

Keira can’t walk on her own and is developmentally challenged. There is no cure for AHC and research funding is limited. Grady enlisted family and friends, and made use of Facebook to obtain a $250,000 grant from the Pepsi Refresh Project. It’s money that’s specifically going to the Alternating Hemiplegia Foundation to help AHC children and families, and help fund research.

„Facebook was really huge with that,“ Grady said, „because it’s really easy to connect with a lot of people and to get people to vote and try to get that money. That’s the most important thing; there’s not enough money out there for research.“

Even though Grady knows Keira will never be on par with other children her age, she’s still optimistic about her future.

For the article on FOX23 click HERE

For more information on AHC research and funding visit