Support for Hayden and Family

The Long and Hanna families are promoting this fundraiser on behalf of Hayden James Long and his parents, Eric & Ashley (Hanna) Long.

Hayden was born with an extremely rare genetic condition called CDG-PIGN (Congenital disorders of glycosylation affecting the PIGN gene.) At the time of his diagnosis in 2021, he was estimated to be the 40th documented case worldwide. Each child with CDG-PIGN has a different abnormality within the PIGN gene. The rarity of the disorder means that Hayden is in uncharted waters and will navigate his own course.

Despite the wide variety in presentation, many types of CDG have a significant neurological component involving the brain and/or spine. Common neurological symptoms include diminished muscle tone, seizures, deficits in attaining developmental milestones, and varying degrees of cognitive impairment.

With a smile that lights up a room and melts your heart, Hayden’s journey unfortunately has included numerous hospital stays, regular therapies of varying types, feeding difficulties, respiratory weakness and multiple medicine prescriptions.

We are prayerfully hopeful for Hayden’s future. However, we do know that his future will include extensive recurring medical expenses, the need for specialized equipment, and dietary supplements. The family is currently in the midst of home renovations to accommodate first-floor ADA living space and bathroom for Hayden and a fully accessible garage and entryway to the home. For these reasons, we have established this GoFundMe account.

Ashley and Eric are wonderful ambassadors for Hayden and they, along with their extended families are humbled by the outpouring of prayers, well-wishes, and generosity of monetary gifts.

We humbly thank of you.