At 5 years old, Holton Jones was diagnosed with ROHHAD, or rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation.
According to the Pensacola News Journal, his parents knew something was wrong with their son since he was three, but they’d been turned away again and again by befuddled doctors. It took a huge scare and an amazing rescue story for Holton to receive a proper diagnosis.
Holton was taking a nap with his mother when his older sister Peyton, walked into the room and noticed he was having trouble breathing. Peyton, at only 11, knew that something was wrong. Holton began to foam at the mouth and Peyton woke up her mother in fear.
As mom started CPR, Peyton called 911. It was the phone call that saved Holton’s life.
Peyton has been commemorated for her bravery, and she was given a celebratory ride in an emergency helicopter. The entire family is grateful she was there when she was and wasn’t afraid to act.
While Holton was in the ICU from the incident, he received his official ROHHAD diagnosis.
A very rare, and very disheartening diagnosis.
Although Holton’s father is an internal medicine physician, he had never heard of ROHHAD, and no one can blame him. Approximately 100 people in the entire world have the condition. While the family is grateful to have an “answer,” there are still many unanswered questions.
They are now investigating potential treatment options for Holton. And though there is a long road ahead, they are staying positive as they move forward.
Read more about this brave family here.