Hello, we are Ryan and Ruth Chroninger. We have three children: Alex (17), Helio (12) and Xochitl (11). We live in Nampa, Idaho, and up until the winter of 2014 we lived a pretty typical military family life. Our middle son Helio began having chronic migraines when he was five years old. They were interfering with his ability to enjoy life as a kid. We made an appointment with his pediatrician, who referred him to have an MRI of the brain. Several MRIs later and after being referred to a multiple sclerosis specialty hospital in San Francisco, Helio, by now six, was diagnosed with ALD.
Shortly after his diagnosis, we were headed to Minneapolis to meet Helio's team of doctors. We met with both Dr. Troy Lund and Dr. Paul Orchard. Unfortunately, there was not a good donor match for Helio through the Be the Match donor bank. Fortunately, Helio's little sister Xochitl was a perfect match! Xochitl was eventually tested to see if she was a carrier of ALD and we discovered she was. With both kids testing positive, it was likely the ALD came from Ruth. She was also tested and was positive for the gene and had already begun showing symptoms. There is not a history of ALD in Ruth's family so the gene was likely a spontaneous mutation for her.
This October, Helio will be six years post-transplant. Our family remains hopeful for continued advancements in treatment and eventually a cure for everyone affected by ALD.
On October 10, Ryan will host a 24-hour Jiu-Jitsu training session to raise awareness and funds for ALD research and advancements in treatment with the help of X out ALD. Please follow us on our journey from X out ALD to "Tap out ALD."