‘His leg was rapidly turning black. ‘Your son is the sickest kid in this hospital. We don’t expect him to make it.’: Mom shocked by life-threatening necrotizing fascitis after being told it was a ‘regular bug’


“Before it all, Jonathin was just a normal kid. He ate non-stop, climbed on everything in sight, and loved hiking. He loved superheroes of all shapes and sizes, from Spiderman to Gekko fromPJ面具,他坚信他是来自神奇的女士虫子

Courtesy of Katie Wilson-Perez

He was in his first year of preschool with two wonderful teachers that he adored, and they loved him just as much. So, they noticed right away on his first day back, from a snowy spring break spent in our home in Indianapolis, that he wasn’t acting like himself. They called and said he was lethargic and had developed a fever, so I came and picked him up from school. I took him to the doctor’s office and she said it looked like just a regular bug (nausea, fatigue, fever) and to give him Gatorade and Tylenol.

一周的进展时,他没有得到任何better. He started complaining that his legs hurt and he didn’t want to walk anywhere. I mentioned this to a customer at work who is a semi-retired pediatric hematologist oncologist and he told me, ‘I don’t want to freak you out, but you need to take him back to the doctor and get blood work done as soon as possible.’


I immediately called and made another appointment for Jonathin. When I got home from work, my husband told me that my son had been complaining that his arm was bothering him. While we were at his appointment, his left arm started swelling up at a rapid rate. His doctor instantly noticed that he was much worse than the last time she had seen him, and agreed that blood work needed to be done because of the pain, redness, and swelling, on top of the other symptoms.



They did blood work, a strep test, an ultrasound, and x-ray. We met with countless specialists from so many different fields that I’m pretty sure most of the staff knows him now. The next morning, he was still talking and complaining about the nurses taking blood for more tests, so I went to work while my husband stayed with him.

Courtesy of Katie Wilson-Perez

当他打电话给我时,我只在那里呆了30分钟,并告诉我我需要尽快回到医院。乔纳森(Jonathin)被送往ICU。我几乎不记得告诉老板“我必须走”,她敦促我离开门。我不记得那里的开车。我不记得停车。我不记得赶到7楼去电梯见我丈夫。我记得的是,一个社会工作者带我们回去,经过一个房间,有大约10至15名护士和医生。他们正在走进走廊。有很多。我们被带入咨询室,我记得不安,告诉我的丈夫,‘我不想在这个房间里。 People always get bad news in these rooms.’

Sure enough, three doctors came in, introduced themselves, and told us, ‘Your son is very sick, probably the sickest kid in this hospital right now, and [we] don’t expect him to make it.’ To say I was in shock is an understatement, and I think the reason I have been able to cope with all of this so much better than my husband is the fact that it never truly set in for me.




Courtesy of Katie Wilson-Perez

2018年4月7日,乔纳森·维森特·佩雷斯(Jonathin Vicente Perez)顽固,直到最后,违反了赔率,击败了坏死的fast和败血症。它影响了他的右腿和左臂和肩膀。他的身体肿胀,他们担心它会到达他的胸腔,这是非常致命的。ICU团队不断将升压器(挽救生命的药物)泵入身体,以使血液流向他的重要器官。不幸的是,在如此多的加压剂上,通常缺乏流向四肢的血液。

Jonathin的右腿筋膜室综合征(a condition in which increased pressure results in insufficient blood supply to tissue) from the knee down, and it was pretty obvious to us from the increasingly darkening purplish look of it that it would not recover.

Courtesy of Katie Wilson-Perez


One does not often look at dialysis as a good thing, but again I will reiterate that everything happens for a reason. Because of the fact that he was on dialysis they were able to do a CTA scan which showed he had good blood flow all the way to the fingers in his left arm. His orthopedic surgeon called around to several ‘seasoned’ surgeons across the US, and one in Texas told him that if there was good blood flow in the arm, he should hold off amputating and see how it improved. If not for the doctor’s thoroughness, and had Jonathin not been on dialysis, making it easy for them to put the dye in his system and then quickly remove it, he would have lost his arm.

A week after this all started, he had his 4th debridement surgery and most of the skin on the shoulder, arm, and hand had to be removed. A few days after that they extubated him and brought him out of his medically induced coma, and we got to see those beautiful brown eyes again. They told us it would be a few days before he’d be able to talk, but again, stubborn Jonathin couldn’t resist the opportunity to flirt with one of his cute nurses and introduced himself to her that evening.

The next day, we finally let his big sister come visit him in the hospital, and that’s when his recovery truly began. She has been his best medicine throughout this entire ordeal and has been the strongest little girl I have ever seen. She was not afraid of all the tubes and wires, the wound vacs, or the progressively blackening bottom half of his right leg. When we explained to her that Jonathin’s leg had gotten very sick and asked her what she thought the doctors should do about it, she explained very matter-of-factly, in 6-year-old terms, that an amputation was the best solution.

Courtesy of Katie Wilson-Perez


Courtesy of Katie Wilson-Perez

Jonathin was always a little terror child before he got NF, but has become quite a sweetheart since everything happened. I often joke that they amputated his evil leg, especially because his stump, which he named ‘Hinata’ (after the Haikyuu! anime character Shoyo Hinata) is always the one blamed for things. It’s like when a kid has an imaginary friend and they blame everything on them. Hinata gets into a lot of trouble, not Jonathin.


Courtesy of Katie Wilson-Perez
Courtesy of Katie Wilson-Perez

On June 21, 2018, Jonathin was discharged from the hospital and we finally got to bring him home.

Courtesy of Katie Wilson-Perez


他必须每周3-4天回到医院,以获得PT,OT和各种任命(骨科,康复,传染病,肾脏,心脏超声心动图,常规血液工作,X射线等),所以我们在the Riley Children’s Hospital most of the time. Thus, we weren’t working or moving as many boxes at the speed we would’ve liked.

Unfortunately for us, someone took notice of our lengthy absences from our old apartment and decided to relieve us of the rest of our personal belongings, including some of Jonathin’s wound dressing supplies. Being kicked while we were already down was no fun, but considering the year we had already had we decided not to let something like this get us down. We had nearly lost one of the most precious things in our lives; Dishes, a vacuum, and a kitchen table (to name a few things) could never compare. When my parked car was involved in a hit-and-run, and we found out the cameras weren’t working, I just shrugged. ‘At least we still have Jonathin.’ I guess I just saw it as us having emptied our good luck bank in one hospital stay, and having to fill it back up by dealing with a lot of bad luck for the rest of the year. 2018 was a year we were happy to see go.


从那以后,他还参加了首届坏死筋膜炎基金会5K,第六届年度杰弗里·雷·戴维斯·塞普西斯挑战赛5K颜色跑,他是第四届年度莱利儿科重症监护(ICU)Walk-a-a-thon-thon-thon-thon-thon-thon-thon thon-thon thon-thon thon-thon thon-thon thon-thon thon-thon-thon-thon thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thonton。He now has a really cool prosthetic leg, which he has completely mastered in the 9 months that he has had it, and we’re currently in the process of making his ‘high activity’ leg that has a running blade that can better keep up with him.

He has gotten comfortable with his prosthetist to the point that he steals his gum and walks around the office like he works there, and probably will someday. He has had the opportunity to meet several other amputees, both at his prosthetist’s office and at the hospital, and has even prompted a few (yes, multiple) classmates to go home and demand elective amputation surgery so they can ‘have a cool robot leg’ too.

Courtesy of Katie Wilson-Perez
Courtesy of Katie Wilson-Perez
Courtesy of Katie Wilson-Perez


Courtesy of Katie Wilson-Perez

I took the Facebook page that I had originally created to update friends and family on his condition, and turned it into a way to reach others and show them the very real consequences of this terrible disease. This eventually branched out to Instagram and now Jonathin’s Journey has 1400+ followers from all over the world. Since his discharge, we have raised over $1050 for the Riley Children’s Foundation, the Necrotizing Fasciitis Foundation, the Sepsis Alliance, TinySuperheroes, and more.

Just when I think I’m running out of ways to raise awareness, a new opportunity presents itself. I refuse to let his suffering be in vain, and will continue to use what happened to him for good. We are beyond blessed to have been given a second chance with our Jonathin, and I will never let it go to waste.”

Courtesy of Katie Wilson-Perez

This story was submitted tobeplay网络一直不畅by Katie Wilson-Perez of Indianapolis, Indiana. You can follow her and her son’s journey onInstagramandFacebook。提交自己的故事here并确保subscribeto our free email newsletter for our best stories.




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