CLINTON — There are still more questions than answers for the Dearman family, as their three-year-old daughter remains hospitalized, recovering from a life-threatening illness. Berkley Dearman was airlifted to St. Jude Children’s Hospital in Memphis earlier this summer, after doctors suspected she had Hemophagocytic Lymphohistiocytosis, or HLH.
HLH is a rare, severe systemic inflammatory syndrome, where the body’s immune system essentially goes haywire, attacking healthy tissue. Berkley’s mom, Katie Dearman, told UWK that doctors were trying to determine if Berkley had Primary HLH or Secondary HLH, because it changes her trajectory.
- Primary HLH is genetic — a lifelong condition requiring a bone marrow transplant.
- Secondary HLH is triggered by infections, like CMV or mono. It can often be treated with medication alone.
Katie said doctors confirmed it was Secondary HLH. Berkley was no longer testing positive for mono, and things were looking good. The family was getting ready to move into an apartment on the St. Jude campus when Berkley’s health took a turn.
“We learned how to care for her and do IVs and everything,” Katie explained. “Then on Friday, she went into septic shock. They still don’t know where the infection is coming from but it triggered high fevers.”
Berkley was taken to the ICU, and doctors ran more tests.
“They did a high-contrast CT scan, and it showed very little blood flow to the majority of her organs because they were all just so inflamed, every single one of them,” Katie said.
Berkley wasn’t able to take deep breaths, so doctors intubated and sedated her, which Katie says is what’s best for her right now.
“She’s still in a very, very critical condition, but she’s stable,” she said.
Doctors at St. Jude are compiling Berkley’s case and reaching out to HLH experts across the country to determine what’s causing the flare-up. “All we know is that her HLH is back and higher than before,” said Katie.
A waiting game
Now, the Dearmans are in a waiting game, unsure of what will come next or what Berkley’s care will look like. Doctors are looking through clinical case studies and even research involving mice.
“It’s going to depend on what the research finds,” she said. “She has a very complex situation going on, so it’s all just going to be determined by what they find.”
The short-term goal is to get Berkley healthy.
“She’s in such a critical state, it is just about getting her to be able to be stable in a point where she’s not critically ill,” Katie said.
Leaning on faith, family, and community
As they have since the beginning, the Dearmans are relying on their faith, their loved ones, and a community that continues to rally behind them.
“There’s not a doubt in my mind that God’s not going to pull her out of this,” she said. “We still have all the faith that He’s going to bring her through this, even when it looks really bad. We’re on day 60. He’s carried us this far, I think that He’s going to continue to carry us.”
The Dearmans have seen an outpouring of support from their family, friends, community, and even perfect strangers.
“People are reaching out that we don’t even know,” she said. “We 100% believe in the power of prayer, and we believe that that’s why she’s here today. We believe that people getting on their knees and praying have saved her life. So we just ask the prayers to keep coming.”
If you want to help Berkley’s fight against HLH and support the Dearman family, a GoFundMe has been set up on their behalf where you can donate.
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