It all started on New Year’s Eve, as the Erwin family of Devine was enjoying fireworks with friends when 13-year-old Hunter got a severe pain in his chest. They took him to the ER where he got a chest x-ray, and ER doctors initially thought Hunter simply had pneumonia. But thankfully, his mother insisted and convinced doctors to do a CT scan, due to Hunter’s complicated medical history in which he suffers from a rare vascular disorder. Thanks to a mother’s intuition, Hunter could get the care he needed, as that next test revealed much more serious, life-threatening conditions that needed to be addressed immediately.
“If the ER docs had sent us home, and I really got the feeling that’s what they were going to do, I really don’t think we could have made it back to the hospital in time,” said mom Samantha Erwin, thanking God that was not the case. “Sometimes you just have to go with your gut feeling as a mom…You have to be an advocate for your child because I have learned doctors don’t know everything, especially when you have a child with a rare disease like Hunter has. I have really tried to educate myself so I can help educate others. They saw that white spot on the chest x-ray and just assumed it was pneumonia, and I said ‘no.’ I knew it was something more serious, and he hasn’t had any pneumonia symptoms. I don’t think he’s even coughed or sneezed in a month.”
Hunter quickly ended up in intensive care in San Antonio, until he could be flown to Texas Children’s Hospital in Houston where he can receive the special care he needs.
“There is not a pediatric vascular surgeon in San Antonio, and so that’s why they tried to fly us to Houston as soon as they could. There was a delay due to heavy fog, and when one of Hunter’s arteries ruptured, the surgeon in SA knew he had to take Hunter into surgery and do the best he could, even though it was not his specialty. I give him a lot of credit for that, and doing the best he could. I think he took four other surgeons in there with him, and they did what they could, before they could transfer us out to Houston.”
The episode came on quickly, as they enjoyed New Year’s Eve celebrations with friends and family.
“New Year’s Eve was just a typical day,” said Mrs. Erwin. “Hunter did his chores, walked his pigs, fed them, and played. That evening after the pigs were taken care of, we went to a friend’s house. Again Hunter seemed perfectly fine. He ate dinner, played video games and was enjoying life. About 7:30 pm, Hunter went outside with the other kids to watch fireworks.”
“At one point he stuck his arms out to help keep some smaller kids back away from the fireworks. He then got a sharp pain in the upper right quadrant of his chest. After realizing the pain would not go away, my husband and I decided to take him into the ER at Methodist Children’s Hospital,” Mrs. Erwin said.
Eight days later, on press day this past Tuesday, little Hunter is still hospitalized and has been transferred to Houston to receive the special care he needs. You may remember our article about Hunter many years ago, as he has suffered from the rare vascular disorder called Ehlers Danlos Syndrome (EDS) all his life.
Hunter’s sister, Tristan Erwin, who graduated from DHS last year, talked about what an inspiration he’s been in her life.
“It’s really hard to see this happen to my little brother. As adults we sometimes ask ‘Why? What’s the point of all this?’ and I have been so amazed by the size of Hunter’s faith. He will tell us ‘God has a plan and things happen for a reason.’ He is always reassuring us. At the age of 9, he had more faith than most adults have. In 2014, he had open heart surgery, and he almost died on the operating table twice. Due to complications from that surgery he also has nerve damage in his right arm. This year when I was home for Thanksgiving his arm was giving him trouble, and we were talking about everything and he said ‘Maybe God gave this to me so it can help doctors learn about this disease, so they can help other kids who have it.’ He is only 13! When he says things like that it really makes me stop and think. Wow, maybe I really need to re-think some things….. It’s been the biggest blessing being his sister. He has never been a selfish kid. He never thinks about himself. Just yesterday he was apologizing to me for having to miss work to come see him at the hospital.”
The family’s pastor Ross Hardwick commented, “For a child to say things like that is amazing, but to me, it’s the thing he doesn’t say that’s even more amazing because I have never once heard him complain. There are a lot of things Hunter cannot do because of his condition, but he just focuses on what he CAN do…..If I were walking in his shoes, I’d be feeling sorry for myself, but that’s not the way he responds. He will deal with this disease again, and he knows he will, and I’m sure Hunter has his moments, yet he is so kind and upbeat in his day to day interaction with other people…. It’s amazing to me how God shows his glory through this young boy in and through this situation.”
Hunter has had a tough time, and the following is a synopsis of the struggles he has been facing since New Year’s Eve:
“The CT scan I requested showed Hunter had a small arterial leak in his right shoulder. They sent us directly to PICU. The doctors determined it was best to life flight Hunter to Texas Children’s Hospital in Houston. We then hit a snag because the fog was too heavy and we could not fly out. While we were in the PICU, before flying out, Hunter’s BP dropped to 47/26. At that point they began blood transfusions. Hunter’s BP would come up after receiving a liter of blood, but soon after, his BP would drop again.”
“After receiving a couple liters of blood, the doctor ordered another X-ray. Those findings showed Hunter’s chest cavity was almost completely full of blood. The artery had ruptured. They decided Hunter was not stable enough to be moved to a different hospital and they had to go do surgery immediately in order to drain the blood and stop the bleeding. Upon taking Hunter to the operating room, it took approximately 2 hours to stabilize him before they could even sedate him in order to start the surgery. Once the surgeons got Hunter open it took about an hour to get to the bleeding. The surgeons had to move very slowly. Upon seeing where the rupture was, they had to make another incision and remove Hunter’s clavicle bone to get to the bleeding. The surgeons “tied off” the area with stitches and had to clamp off some veins which were also bleeding,” Mrs. Erwin continued.
Once out of the operating room and back in PICU, Hunter was stable enough to fly out to Houston that evening (January 1).
“Upon our arrival at Texas Children’s, the vascular surgeon decided he would not take Hunter in to repair the artery. We/they found that the artery that ruptured was the same artery that blew four years ago during his initial open heart surgery and because it had closed off over time, the other capillaries had found a way to re-map themselves to supply the arm with blood. Because of this the surgeon did not feel it was necessary to try to go in and repair the artery and possibly cause more damage,” Mrs. Erwin said.
“Since being at Texas Children’s Hospital, Hunter was in respiratory failure due to the blood being in his chest cavity; it caused damage to the lining and tissue of his lungs. Hunter was intubated until Jan 6th. Everyday his chest X-rays improve and there is less fluid draining out of the chest tube.”
On Monday, January 7th, Mrs. Erwin stated, “Currently the doctors are trying to get his pain under control and then we will re-evaluate to see Hunter’s progress and what the next steps in the game plan will be,” Mrs. Erwin adds.
Why the Zebra?
If you are looking at the Facebook fundraiser titled “Hunter is Zebra Strong”, you may be wondering what the zebra symbolizes. According to EDs awareness website, “People with the Ehlers-Danlos syndromes often identify themselves as zebras. Medical students have been taught for decades that, “When you hear hoof beats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it…..So the zebra became our symbol to mean, “Sometimes when you hear hoof beats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare.”
Hunter LOVES getting Cards and Letters from friends, and community; donations appreciated too
A very thoughtful kid, Hunter’s mother and sister told us he would really, really enjoy getting some cards, or letters from classmates, friends, and the community.
We are sure he would love to hear from the Warhorses and Arabians, his peers at Devine Middle School, as well as the Warhorse Marching Band.
“He loves football, band (he is in the 8th grade percussion section), UIL Chess team, and loves Pokemon cards, soccer, pigs (he loves to show pigs in 4H). He has an extraordinary love for animals and hopes to be a veterinarian someday. He also loves hunting and fishing,” his sister Tristan said. “He also would love Zebra cards or animals as zebras are the EDs awareness mascot (read more about this in other article this week).”
Right now because of being in ICU, Hunter cannot receive anymore balloons or any plants. He can receive cards, and stuffed animals.
“Cards would be greatly appreciated,” Mrs. Erwin said.
Many of you may recognize Hunter and his family who moved to Devine many years ago. He is the son of Samantha and Doug Erwin, and siblings are Tristan (Devine HS Class of 2018) and Ethin (6th grade). They attend the Cowboy Church in Hondo. The family would like to thank everyone for their thoughts, prayers, and outpouring of love.
Let’s keep it going Devine, and help cheer up this amazing young man as he fights such tough medical circumstances.
Letters, cards and donations to the family’s temporary living arrangements while Hunter is hospitalized:
Ronald McDonald House
ATTN: Samantha, Doug and Hunter Erwin
1907 Holcombe Blvd Room #221
Houston, TX. 77030
A family friend, Deb Franz, has also started a Facebook fundraiser and is hoping to help the Erwin family so mom and dad can focus on being with Hunter at the hospital in Houston during this trying time. You can find a link to the fundraiser on Deb Franz’ page or on Samantha Erwin’s page or simply mail a card and or donation to Hunter at the address provided in this article.
“Hunter has touched many lives by his faith in God, strength, kindness, and love,” said friends Deb and Cody Franz. “Even through all the medical side effects because of EDS, he always has a smile and warm hug to offer. He knows more about life than most adults for everything he has gone through. The Erwin’s would never ask for anything, but this family blesses so many! Their faith in God is incredible! I created a fundraiser to help with some of their expenses while they focus on being with Hunter. Anything would be a blessing to them. Although set at a goal $5,000, their needs will be possibly 100 times more than that before Hunter is out of the woods and his aftercare continues as well…Thank you & God Bless!”