Hayes' family and community are uniting to raise funds for the many medical expenses necessary to understand and fight his mystery illness.
In October of 2013, at 17 months old, the Hayes Heller we knew began to disappear. Up to that point, he was a typical little guy. A playful vibrant little boy, Hayes loved playing "I'm gonna get you" games, swinging his golf clubs, and riding on his Daddy's saddle. He could crawl as fast as lightning and walked holding the hands of his mom or dad.
When Hayes' parents expressed concern about the fact that he wasn't walking on his own yet, this difficult journey began. His doctor and physical therapist-aunt noticed both muscle tightness and weakness in his legs. Within a week, Hayes could no longer stand with support or crawl. Soon after, he could not sit unsupported. As his illness progressed, Hayes developed difficulty using his hands, lost the few words he spoke, and began to have difficulty chewing and swallowing his food. This sweet, precious boy lost all of his independence and was given instead poor muscle coordination and cramping.
He was diagnosed with a tethered spinal cord and has undergone one surgery to repair it. His family is eager to see some sort of relief after this. The tethered cord diagnosis only explains a fraction of the symptoms Hayes is showing. It does not explain the neurological concerns. Over two months after his symptoms began, the many specialists working on Hayes' case still do not understand what is going on, but they continue to test and explore. Still, the hope, love, support, and prayers from his community continue in full force.
To date, expenses are in the tens of thousands. And this is only the beginning. Without a diagnosis, Hayes is looking at much more testing. There will be the many "short trips" to the specialists and children's hospital 2 hours away. There will likely be other trips to specialists outside Texas, even as far as London. Hayes now requires adaptive equipment for eating, bathing, and mobility. He is being fitted for his first (but not last) wheelchair and his future will also include home renovations to accommodate his mobility needs.
Thank you for joining Hayes and his family in their journey of discovery. Discovery of answers, treatment, and a bright future.