Editor’s note: The following story was submitted for the Shaler Area Student Section, a collaboration between TribLive and The Oracle, the student newspaper of Shaler Area High School.

For many teenagers, the hardest part of their day is figuring out what to wear or what they will eat for lunch.

But that’s not the case for Shaler Area High School senior Deven Wilson, who wakes up every day wondering if today will be the day a kidney donor has been found for him.

Just two years ago, Wilson was participating in a volleyball tournament. Not long after that, he became sick.

“At first, we thought it was some sort of virus. Then we suspected pneumonia. After a visit to urgent care, he was prescribed antibiotics. He continued to get worse, and we took him to the ER and he was admitted. He was coughing up blood and his oxygen levels were extremely low so they moved him to the ICU. Never in our wildest dreams would we have expected what would happen next,” said his mother, Tina.

The ICU is where Wilson was diagnosed with GPA vasculitis, a rare autoimmune disorder that causes the inflammation of blood vessels in multiple organs, specifically the lungs, kidneys and sinuses. The cause of the disorder is currently unknown, and there is no known cure.

Things were still not going well after that diagnosis so doctors decided to run additional tests.

After weeks of waiting while also suffering from multiple seizures, colitis, pancreatitis and more, tests showed the vasculitis had triggered a secondary disease called TMA, which is short for thrombotic microangiopathy. In Wilson’s case, it was in the form of aHUS, atypical hemolytic uremic syndrome, an extremely rare disorder that causes blood clots in the body’s smallest blood vessels which could lead to organ damage, specifically in the kidneys.

According to Wilson, his doctors called it the “rarest of rare.”

About 3 in 100,000 people have been diagnosed with GPA vasculitis, and roughly 0.35 in 2 million have been diagnosed with aHUS.

At first, doctors didn’t realize Wilson had both illnesses. While waiting for lab results, Wilson was being treated for what doctors thought was solely GPA vasculitis even though they should have been treating the aHUS as well. Not only was precious time wasted on doing these treatments, they also caused him to suffer from multiple seizures.

“It was very scary. It is difficult to even look back at that time because we did not know what the outcome was going to be. They had to intubate him, and he was out of it. We didn’t know if his brain was damaged, and it was agonizing waiting until the next day for all of the testing to be done,” Tina Wilson said.

Between various tests, biopsies, seizures and visits with rheumatology, pulmonology, nephrology, oncology and immunology experts, Wilson wasn’t able to return to school his sophomore year and had to finish the school year online.

Even though he was able to return to school for the 2024-25 school year, his health was still declining. With the aHus diagnosis and what the disease was doing to his body, it was clear Wilson was going to need a kidney transplant and would need to start weekly dialysis treatments.

Dialysis is a medical treatment that drains the excess fluid, waste and toxins from one’s body when the kidneys are unable to perform those tasks.

The treatment isn’t an enjoyable experience, especially for Wilson. He has lost consciousness multiple times and has become sick to his stomach because of the intense treatment which prevents him from coming to school.

He currently goes to dialysis three times a week and comes to school for the final four periods of the day.

“Going to dialysis is hard for us but especially for him. It is really hard on his body, and he rarely, if ever, complains about it. He knows he has to do it and he shows up. Even when he knows there’s a possibility of him getting sick after, he still pushes through,” Tina Wilson said.

But balancing school and dialysis at the same time is extremely difficult.

“School is hard, because I get sick a lot. Last year, I missed a good bit just because I was getting so sick all the time,” Wilson said. “It’s very hard now because I can’t do a lot. I can’t risk damaging anything nowadays. I just have to play it safe.”

School isn’t the only thing he has missed out on because of his illnesses. Wilson was a member of the Shaler Area boys varsity volleyball team before everything happened.

“I really wish I could play. I haven’t played since freshman year. I help out with coaching and stuff sometimes, but I can get sick very easily because my immune system is very suppressed. So I just have to play it safe,” he said.

This whole experience hasn’t just been extremely hard for Wilson, it also has been difficult on his family. His twin sister, Kori, has been there every step of the way. At first, she thought her brother’s illness was just a cold he would shake in a couple of days — but as we know, it was much worse.

“It’s been extremely hard. You try to forget about it and distract yourself, but there’s always constant reminders that this is happening and it’s real. It’s very painful, but also you have to balance the fact that it’s happening to (Deven) and you have to be there for him,” she said.

Tina Wilson has been doing everything in her power to stay strong for her son as the search continues for a kidney donor, but it has been difficult.

“I try to stay upbeat for him. When you’re alone though, your mind races. It can be tough to not focus on your fears, but then you must reel it in and be grateful for everything good and positive going on,” she said. “I am confident he will get a kidney, and I visualize how this new kidney is going to make a huge difference in his life. Even though we hoped it would have happened this summer, I keep telling myself he will find a match very soon.”

This hasn’t gone unnoticed.

Wilson credits much of his motivation to the support he’s felt from the community, his family, as well as his faith.

“I have so much support around the world. I have my friends, family and everyone that supports me, so it’s a bonus. I’m also very religious and my grandma is as well. And she tells me about the people all around the world that she knows that contact her and tell her that they pray for me. So it’s very motivating,” he said.

Even with all of the support, treatments and medications, Wilson’s health has really not improved. The diseases are being controlled with medication, but his kidney function continues to decline and the complications associated with that also continue.

He has been in and out of the hospital a number of times. In a recent life-threatening event in June, Wilson was rushed to the ICU in the early-morning hours unable to breathe. He had experienced a flash pulmonary edema, a sudden and severe accumulation of fluid in the lungs that can lead to respiratory distress.

“I felt helpless and scared watching from the door as the doctors and nurses had to rapidly intubate and stabilize him,” his mother said.

To put a stop to these complications, there is still one main goal: Find a kidney donor.

“Deven is currently in kidney failure, and dialysis is a life-sustaining measure. He needs a new kidney now. The kidney is going to change so much for him. The kidneys are so very important in your body and really affect more than we ever realized,” Tina Wilson said.

The Wilson family has been promoting his story in hopes to find the right donor. His father, Robb, created the website “Deven Needs a Donor” — devenneedsadonor.com — to spread awareness.

“You have to be the advocate for your kid. You have to be on top of it all the time,” Robb Wilson said. “Having the website is an important piece to promoting Deven’s cause. We want to do more on the website and share more.”

According to the Deven Needs a Donor website, “Many people on the kidney transplant waiting list think that they must remain on the transplant waiting list until a deceased donor organ becomes available. But, there is another option: living donation. Advances in surgery and care allow people to donate a kidney to help relatives, friends or even strangers in need of a transplant. Having a living-kidney donor can help a patient avoid the typical wait times of up to several years for a deceased-donor kidney. A kidney donation from a living donor often has better outcomes averaging 15-20 years rather than 8-12 years for a deceased donor. Finding a living donor will most likely get (Deven) off of the list sooner and on to living his life again.”

Donating a kidney can save a life, giving someone who is struggling a second chance at everything. At livingdonorreg.upmc.com, anyone can fill out the form to apply to donate not just a kidney but a liver as well. Even if they aren’t a match for Wilson, they still could be a possible donor for another person in need.

Even with the family’s efforts, the quest to find Wilson the perfect match hasn’t been easy. Potential donors have to go through many different tests and evaluations to donate their kidney. These requirements include the donor having a compatible blood type, the donor cannot have uncontrollable high blood pressure or diabetes, and the donor cannot have any active infection.

“Possible donors sign up to be tested. They fill out the form, and then the doctors will contact them to try and get them evaluated. They’ll go through tests but still they can’t tell me anything. So I have no clue how many people have been evaluated or rejected at all. It’s pretty tough not to know that,” Wilson said.

It has been a long two years, but the Wilson family knows a new kidney would be life-changing.

“The last two years have not been good, but we are looking forward to what a new kidney can do for him and his quality of life,” Tina Wilson said.

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