Kyle Hutty loves video games, being outdoors and hanging out with friends and family. He has unwavering faith and is well-spoken, cheerful and fun to be around.
He’s an advocate, a fighter and the kind of person who makes you better just for knowing him. You see, for Kyle, chronic illness is only a part of him – but it’s not who he is. When he was 4 years old, Kyle was diagnosed with nephrotic syndrome at Levine Children’s Hospital. At the core of his chronic kidney disease is something called focal segmental glomerulosclerosis, or FSGS. It’s a rare disease that attacks the kidneys, causing serious scarring, permanent kidney damage and often kidney failure. Through it all, he’s made the best of it, says Susan Massengill, MD, who’s been one of Kyle’s kidney specialists from the start. “He’s the epitome of what we tell people: Don’t let this illness define who you are.
And Kyle hasn’t,” she explains. “He’s living life. On his worst days, he finds something good about it.” In the years since his diagnosis, Kyle has been on almost every treatment plan and medication possible. But in 2018, his kidneys became resistant to therapies that kept his disease manageable. He spent a third of the year in and out of the hospital, combatting every complication imaginable, from infections to blood clots to swelling too – ultimately – kidney failure. Currently, Kyle is on a form of chronic dialysis called peritoneal dialysis, as he awaits the next step in his treatment journey: a kidney transplant.
For most of his life, Levine Children’s Hospital has been like a second home to Kyle. “I love the people and the staff,” he says. In all the time he’s been a patient – and all the visits – his care has gone far beyond medical. Kyle says his team has felt more like family, helping with everything from shopping for school clothes to getting his homework done.
Following his kidney transplant, Kyle will need medications and clinic visits for the rest of his life. His condition, FSGS, has a high rate of recurrence, which means it can come back. So even with a transplant, there are risks and no guarantees. “Kyle is the strongest person I know,” says Nicole, Kyle’s mom. “There are so many days he struggles, but he still keeps going.” Just like Kyle doesn’t let his condition define who he is, he doesn’t let it define his future, either. Despite his challenges, he’s maintained a 3.5 GPA in advanced courses at school and is looking forward to college, travel, and freedom.
As always, Kyle is looking on the bright side – which, for the rest of us, means just looking at Kyle. As he waits for this next step in his treatment, Kyle is redefining what it means to have a chronic illness, and most importantly, what it means to be Kyle. Whatever his future brings, Levine Children’s Hospital will be there every step, helping him live his.
You can help bring hope back to those children in need like Kyle by donating to the Levine Children’s Hospital this holiday season. Your gift will bring hope to our patients and their families and will help each child at Levine Children’s Hospital have an unforgettable holiday.