Hunter looks like most 14 year olds. He wears glasses and always has a twinkle in his eye, like maybe he is about to tell you a joke.
The youngster, who lives in Devine, enjoys fishing and being outside. For the last 4 years he has been raising and showing pigs for FFA, and has even added the title of pig breeder to his resume.
But one thing that lies just below the twinkle in his eye makes Hunter Erwin very different from the average teenager: a diagnosis of Vascular EDS, and more specifically the most severe form of Ehlers-Danlos Syndrome. As a result of that diagnosis, Hunter and his family live with the knowledge that although he looks like any other teenage boy, Hunter truly has to be handled with care.
Vascular EDS is caused by a mutation in the COL3A1 gene and impacts the body’s production of collagen. This makes EDS patients have a high risk of ruptures of the arteries, intestines and other internal organs, and makes dislocated joints more likely. The long-term prognosis is not good—most patients only live to their mid-40s.
When Hunter was little, his mom, Samantha Erwin, noticed he seemed to bruise easily, but chalked it up to his pale skin, red hair and being a rough and tumble toddler boy. At age 9, he had a planned surgery for a heart condition that was discovered before birth.
During the surgery, things went wrong in ways doctors could have never predicted. What should have been a 4.5-hour surgery turned in to a 13.5-hour surgery and a 28 day hospital stay, and included doctors being forced to leave his chest open for two days and nearly having to amputate his right arm. Hunter died twice while on the table. Following therapy to help him learn to eat and walk again, Hunter went to a genetic specialist who confirmed he had Vascular EDS, which is so rare it only occurs in 1 of 250,000-500,000 children.
Vascular EDS means Hunter can’t play sports. In May his doctor decided he can also no longer participate in percussion in band, which he has done for the last few years, because of the increased pressure it puts on his lungs and blood vessels. The risks of those activities are just too great.
He can, however, show pigs and he has excelled at that. Hunter started his other endeavor, PFC Show Pigs, with his eye on a bigger picture: to breed pigs to help kids who can’t show or can’t afford to buy pigs.
His family got a scare on New Year’s Eve in 2018. During a gathering at a family friend’s house, Hunter put his arm out to keep some younger children from getting too close to an area where adults were popping fireworks. He felt a stabbing pain and told his mom, and she, “Immediately knew we had to get it checked so we drove straight to Methodist.”
A CT scan revealed a 1.5-cm leak in one of his arteries. Within eight hours, the artery ruptured, filling the right side of his chest cavity with 6 liters of blood and warranting an emergency surgery to tie off the artery. The blood in Hunter’s chest cavity pushed his diaphragm up 4 inches, causing a collapsed lung that still has not healed nearly two years later. “The doctors at Methodist really wanted to send us to Houston, because there was not a pediatric vascular surgeon in San Antonio, but the fog and smoke from fireworks wouldn’t allow for flying and it was an emergency, so it was done in San Antonio and then we were later flown to Houston.”
That recovery coincided with the 2018 stock show season, and friends stepped up to help show his animals at the county and major stock shows.
Hunter’s mom has a full-time job managing her son’s condition. She keeps detailed notes on his entire medical history and has them typed up in packets, which are strategically placed around the house and in all the vehicles. At any moment, they are ready to give his full medical history to a doctor who knows nothing about him or hand a packet to an EMT.
Samantha has distributed the emergency packets, which include first aid kits specifically tailored to his condition, throughout the school. She knows his medical history almost by heart and is prepared to recite it at any moment to medical professionals. She is used to pushing for tests that wouldn’t normally be done after common falls, because she knows they can lead to small tears which can have major consequences.
It is not uncommon for her to spend hours on the phone with insurance companies, arguing when they don’t want to pay for blood pressure medication. Hunter’s doctor has said because of the delicate nature of his vascular system, his blood pressure cannot go over 110. “Insurance can’t figure out why a 14-year-old boy needs that much medication for blood pressure.”
With that, she looks at Hunter with admiration and a smile. “We will figure it all out eventually. You know, you would think—he is 14 and has been through this—you would think he’d hate the world, but he doesn’t.”
In fact, Hunter is currently enrolled in a 10-year study on technology that could help predict aneurysms. When doctors asked if he would participate, Hunter didn’t even hesitate. “If it will help others, of course I have to do it.”
Living with Vascular EDS brings sayings about life changing in a moment into perspective. “We knew the risk we are taking every day, but his second incident really drove that home.”
Hunter is truly a medical marvel, having survived two arterial ruptures in the last 5 years. His family is thankful that they have a cardiologist in Houston who is knowledgeable on the condition, and they make trips once or twice a month for check-ups. Although it is a long drive from Devine they acknowledge that it is closer than it could be.
Through my visit, their entire family maintained a trademark worthy calm spirit. As Samantha Erwin watched her boys run around us in the yard and mess with the pigs, she said, “This is not easy. But if we can use this to bless others and show them how much prayer works, we will.”