Nothing stops Justice

A rare disease can’t stop a Carterville boy from enjoying life


Isabel Miller | @isabelmillermedia

Justice Williams runs the ball Saturday, Oct. 5, 2019 during his last flag football game of the season at James Street Park. The match was the same day as Justice’s birthday and he brought cupcakes to share with the team after.

On a late September afternoon 7-year-old Justice Williams’ face started to turn red and he began to cough during football practice at James Street Park in Carterville, Illinois. While the other kids on the Tri-C Athletics first and second grade Bears flag football team continued practicing drills, Justice sat off to the side of the field to take a break. After a few minutes of resting he got up and joined his team.

To an outsider, this might not seem like anything unusual, but family members understand this is a part of something more significant.

Justice has a condition known as Atypical Hemolytic Uremic Syndrome (Atypical HUS). One in 500,000 people are diagnosed with the rare disease, which causes excessive clotting in blood vessels and can lead to organ damage. It especially affects the kidneys.

Isabel Miller | @isabelmillermedia
Justice Williams shows his little brother around the field after his last flag football game against the Carolina Panthers Saturday, Oct. 5, 2019.

Justice’s mother Danielle Williams said that throughout the football season Justice put in a lot of effort.

“I think [football] brought out his confidence, especially this year,” Williams said.

She said Justice would be so excited to ask her about whether she saw him grab the opposing team’s flag, or about a successful block.

Justice is treated every two weeks with home visits by a registered nurse who specializes in home infusion.

Before the infusion, Justice sits on the ground playing with an iPad while Registered Nurse Denise Landis takes his vitals.

Isabel Miller | @isabelmillermedia
Justice Williams holds his iPad while Registered Nurse Denise Landis takes gets everything ready to begin his infusion Sunday, Sept. 29, 2019 at the Williams’ home.
Justice’s father says that this is not the first time that Landis has made the two and a half hour drive on a Sunday to treat Justice.

Landis has been treating Justice for five years and says that he is one of her favorite patients. She works at Option Care, which specializes in home infusion.

“We are emotionally attached to ‘Saint Denise.’ That’s what I call her,” Williams said.

Option Care, based in St. Louis, Missouri treats patients within a radius of 75 miles, but for Justice, she said, they go the extra mile.

“He’s one of my favorites,” Landis said. “I will even come on a Sunday to see him.”

During the visits, Justice is infused with Soliris, which costs around $20,000 a dose.

To begin treatment with Soliris, Justice had the port put in when he was only 9 months of age. It has only been replaced once.

Before the infusion Landis applies a cream to numb the skin around the port.

The time it takes depends on how still Justice can be while the needle is being put in, or whether anything falls out during the process. It can be difficult to access his port.

Isabel Miller | @isabelmillermedia
Justice Williams sits with his mother Danielle Williams as Nurse Denise Landis takes his vitals during his infusion Sunday, Sept. 29, 2019 at the Williams’ home.

Landis says that over the years infusing through Justice’s port has been tricky.

“If anybody has trouble with his port the next time, it may be a little more difficult to get his comfort and his trust,” she said.

“If we had to go without [Soliris] it would mean that he is susceptible to a relapse,” Williams said.

Because of the high cost of the drug, Williams said she is lucky that their insurance has been helpful.

If Justice did not receive Soliris, he could relapse within months or years, or in as little as a day. If he went into relapse Justice would require a kidney transplant.

Williams said as a baby Justice grew out of his clothes quickly. She recalled the night she noticed his socks were cutting into his feet. It was actually fluid building up in his legs.

It wasn’t until Justice had a seizure that the family discovered something was wrong. They took Justice to urgent care where he was originally diagnosed with pink eye. Several days later he was diagnosed with Atypical HUS.

Williams said that because the condition is extremely rare, she hasn’t been able to relate to many people, but friends and people in the community have been supportive of her son. She said talking to people about the disease is therapeutic and she is always open to questions.

“We want Justice to feel that this is something that is okay,” Williams said. “It’s not something to be sad or embarrassed about it. It’s who he is.”