There will be a concert fundraiser Sunday afternoon at First Christian Church in Hopkinsville for two local children battling a rare genetic neurological disorder.
Jincy Hayes is the grandmother of five-year old Riley and three-year old Harrison Frost—who are two of only 60 children in the world with the disorder known as Infantile neuroaxonal dystrophy—or INAD for short.
She says their parents—Jason and Whitney Frost—noticed symptoms with Riley when she began to regress in her physical capabilities as a toddler.
Tests showed it was INAD and there are very few treatment options available that attempt to reverse symptoms. There is at least one clinical trial the family hopes the children can be accepted into and Hayes says there are genetic studies in Europe that could mean hope for the future.
The disorder is physically debilitating and requires nurse care and travel that becomes very expensive. A trip to New Jersey is scheduled for next month in hopes of acceptance to the clinical trial program.
The fundraiser Sunday afternoon at 4 at First Christian Church features music from Dean Phelps—who performs a mix of gospel, blues and classic country. There’s not cost of admission for the outdoor concert, but donations for the Frost children will be accepted.