PORTSMOUTH, Va. (WAVY) — Susan Geoghegan was born and raised in Hampton Roads. When she met her husband, Michael, they were excited to start a family together. What they didn’t realize was that they both carried a rare recessive gene. They only found out after their daughter Lorelei was born and diagnosed with mitochondrial disease. It’s a life-limiting disease so rare, there have only been a couple dozen documented cases world-wide.

Doctors told Susan and Michael there was a good chance any other children they had together would face the same devastating diagnosis. That’s what happened when their son, Benji was born.

From heartbreak to hope, Susan is now working to support other parents in the same position with her non-profit “The Apricity Hope Project.” From creating care packages to hosting caregiver retreats at their hot pink beach house, they’re finding ways to help parents “get their pink back.”

From sponsorships and donations to volunteering, there are many ways you can help out. Visit ApricityHope.org to learn more.