How Washington's Little League community has rallied behind teammate's HSP diagnosis
In December 2021, a routine wellness check for Ammon Johanson turned out to be not so simple.
Prior to the check-up, Johanson’s mother, Monica, noticed a rash on Johanson’s feet, and told her husband Shane to make sure the doctors took a look at it.
At first, doctors didn’t seem concerned about the odd rash, but did precautionary blood work.
Two days later, more blood work was required.
As time passed, the rash on Johanson’s feet started to worsen, and he gained 30 pounds in three weeks in that time.
The Johansons eventually made their way up to Intermountain Primary Children’s Hospital in Salt Lake City for a biopsy.
“I was super confused on what was happening,” said Johanson, now 14 years old. “I didn’t think much of it. I just thought we were going to get this biopsy done and get out of here. And then they told us, ‘You’re not doing okay,’ so we just had to stay there.”
They stayed at the hospital for eight days before finally returning home.
Johanson was dehydrated and his kidneys were failing.
Doctors diagnosed Johanson with Henoch-Schonlein purpura (HSP), an auto-immune disease that causes blood vessels to become inflamed and bleed.
Johanson’s rash was his blood reaching the surface of his skin.
HSP is the most common form of vasculitis among children, with an annual incidence on the order of 140 cases per million persons, per Johns Hopkins. The mean age of patients with HSP is 5.9 years old.
Vasculitis is an inflammation of blood vessels that causes changes in blood vessel walls. Swollen and sore joints as well as digestive tract symptoms are also common with HSP.
“It is a concern where anytime he gets maybe an injury or a sickness, his body will start making extra blood again,” said Monica Johanson, Ammon’s mom. “That’s what the body does, but when the injury, illness, virus, or infection, goes away, the body goes back to regulating the making of the extra blood to fight it off.”
Nobody in Johanson’s family had ever heard of HSP prior to his diagnosis.
Monica then posted online about HSP and received feedback saying it wasn’t a big deal, and that Ammon would be on the mend soon.
His doctor at Children’s Hospital disagreed, saying that Ammon’s case of HSP was one of the most aggressive he had seen.
“I didn’t really know what was going on,” Ammon said. “I just didn’t want to accept that it was something severe. I just wanted it to go away in a few weeks and just be done with it.”
Since his diagnosis, Ammon said he gets fatigued a lot and has gotten more sick than usual because of the effects on his immune system.
Due to his HSP diagnosis, Ammon has been kept out of school and limited in sports, particularly baseball.
“Trying to figure out how to keep him up with his peers and how to include social but then keep him healthy at the same time has been one of the hardest challenges,” Monica said.
Ammon said he tried to return to school but fell sick again, and has since been homeschooled.
Refuge on the diamond
Baseball runs in the Johanson family.
Ammon's brother, Sam, plays baseball at Hurricane. His dad Shane coaches the St. George Sentinels Legion team.
“One of my favorite parts of playing baseball is the hitting aspect,” Ammon said. “It’s super mental so you have to learn how to deal with that through hitting and what the pitcher is thinking.”
Ammon is part of the Washington Little League Junior All-Stars that recently won the Utah state championship and moved on to the West Regional in Bend, Oregon.
He was limited in his playing time in the state tournament but was able to play a few innings in the field.
“It was super fun. I’m glad I got to play in it a little bit and get back to baseball,” he said. “I’m super excited to get to Oregon. I’ve never been that far for baseball so I’m excited for that.”
In May, Ammon's friends and the Washington Little League community banded together to sponsor him with a home run derby fundraiser to help with medical costs.
Ammon even got to take part in the fundraiser.
“Just the outpouring of love and care for Ammon and our family has been tremendous,” Monica said.
“[Baseball] has given him something to look forward to,” she continued. “It’s also really discouraging because he wants to be as good as he used to be. We eat, drink, sleep baseball at our house. That’s all we do. It’s hard when you’re used to being the pitcher, catcher, third baseman and being at the top of the batting lineup and here you are benched.”
Johanson adds that she is grateful for the coaches for letting Ammon on the roster and see some playing time despite battling HSP.
“It’s been really helpful because I didn’t know that people cared that much about it,” Ammon said. “Just seeing every just rally up is super nice and has really helped our family a lot.”
Monica works at VASA Fitness and has met people who have heard about Ammon’s story. A prayer group has formed to pray for Ammon every day.
That group has evolved into praying for multiple people a day, but it all started with Ammon.
A fun run was also done in honor of Ammon in February.
“It’s humbling to have it be us,” Monica said. “I’d rather be doing it for someone else, and yet it’s amazing and awesome to see people come together.”
For now, Ammon takes living with his HSP one day at a time.
It’s unclear whether Ammon’s HSP will ever subside, and he has to avoid foods high in sodium.
“I just try to push through it. I have to do it because I know it will make me better. If I do that, I know it will make me healthier.”
Sean Ellertson is a sports reporter for the St. George Spectrum & Daily News. To continue to support his work, please subscribe to The Spectrum. Follow Sean on Twitter @SeanEllertson.
This article originally appeared on St. George Spectrum & Daily News: Utah Little League community rallies behind teammate diagnosed with HSP
