A Seaford family is sharing their journey and looking to help other families impacted by a rare genetic disorder.

Jennifer and Ed McMormack's 4-year-old daughter, Hailey, has AGS, or Aicardi-Goutières syndrome. It affects different parts of the body including the immune system, brain and skin in infants and babies. There is no cure.

The family says Hailey is a bright, determined child and they want to help as many families as they can.

"It was a lot of misdiagnoses first, and that's really what fuels our mission. We have HaleysGrace.org. We're trying to help other families in similar situations," Jennifer said.

"She's so with it. She's sassy, she's witty. She's smart," Ed said.

The McCormack's held a fundraiser at Mulcahy's in Wantagh today. Donations raised will support the John Theissen Children's Foundation. The family hopes to one day start their own organization to help those affected by AGS.