Lebanon boy battling life-threatening disease

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By Emily LaForme

Six-year-old Bentley Burress has been in the hospital for five months, and still has a long way to go while battling a rare disease that’s attacking his immune system. 

“Bentley was diagnosed with a life-threatening disease called Hemophagocytic lymphohistiocytosis or HLH,” said Brittany Mays, Bentley’s mom. “He had always been a really healthy little boy. He hit all of his milestones. He was like any other child. It wasn’t until last May when he got really sick.” 

In the beginning of May 2017, Bentley was sick and running a high fever, which his family and medical professionals assumed was due to a viral infection. After several weeks of no improvements, Bentley was taken to Norton Children's Hospital (formerly Kosair Children's Hospital) where they had originally diagnosed him with Histoplasmosis, a lung infection. 

“He came home for a month before he was getting really sick again,” Mays said. “He was running a fever and losing a ton of weight. They were running all these tests but couldn’t figure out what was wrong with him. We eventually brought him home when he was well enough and he was fine until September, when he became unresponsive after a family event.”

Bentley was taken to Spring View Hospital in Lebanon where they said he was having a seizure. The hospital sent him to Louisville, where they ran an MRI and found three small lesions on his brain. 

“They kept running tests but he was blowing everyone’s mind because they couldn’t figure out what was wrong with him,” said Mays. “We would go home and they were still testing. This went on until March 19, when Bentley seemed like he was on his last leg of life. He was really weak.”

Mays was also pregnant at the time with her third child. After giving birth via C-section, she got the call from Cincinnati Children’s Hospital, who had finally figured out what was wrong with Bentley.

“They told me I needed to get Bentley there as quick as I could because he had a life-threatening illness, HLH,” said Mays. “Most of the time, if it isn’t treated within six months, it is deadly. But, he somehow had gone a year with it. They gave me until March 26 to get there with Bentley and my newborn little girl.” 

HLH attacks the body's immune system. Certain white blood cells called histiocytes and lymphocytes attack the other blood cells. Ordinarily, these cells should destroy infected, damaged cells of the body. In HLH, the immune system begins to damage the tissues and organs, including the liver, brain and bone marrow where blood is made.

Bentley’s parents both carry a good gene and a bad gene for the HLH disease in their genetics, and Bentley was their only child to get the two bad copies to have HLH.

“He has had to undergo several chemo treatments a week to calm the flare ups from the HLH and has spinal taps weekly for three months,” said Mays. “Following our arrival, we found out Bentley had to have a bone marrow transplant, which was successful. We plan on meeting his donor in two years.” 

Mays and her newborn daughter, Mavry, and Bentley have not left Cincinnati Children’s Hospital or the Ronald McDonald House since they arrived on March 26.  Bentley also has an older brother, 10-year-old John Paul Jr., aka “Scooter”, who stays with his grandparents and Mays’ husband, John Paul Burress, in Lebanon. John Paul had to return to work in Lebanon in order for Mays to be able to stay with Bentley 24/7. 

“Our whole lives have been turned upside down,” said Mays. “My oldest son has to be at home without his mother and his siblings. Of course he has his father and we have a great support system with our family, but it’s hard on him. I have one child sick and suffering, I have another child that misses his family, and a newborn that doesn’t know life outside of a hospital.”

Mays said she has gained a new perspective about what parents and sick children have to go through, describing her perception before as “on the outside looking in.”

“You just don’t ever think this is going to happen to you, but it has made us stronger because you have to be in a situation like this,” said Mays.  “He’s been a brave little trooper and has been through more then any child should have to endure.”

Despite the trauma they are enduring, Mays said their family and community have rallied around Bentley and have helped them get through their time at the hospital.

“We are very blessed to have a huge support team behind us with our family and the community,” said Mays. “You don’t really understand the value of family until you are in a situation like this. If it wasn’t for my family I don’t know how we would get through this.”

Bentley will always be in danger of getting a flare up of the disease again, and will have to be very careful of germs in the outside world for a long time. But, he has remained positive. 

“He has fought for his life,” said Mays. “If I hadn’t gotten that call when I did, I’m not sure that he would still be here. Still, he is such a sweet kid that just wants to love on you. He loves people. He is a teddy bear. He is walking testimony to prayer.”

Mays is thankful to everyone for the support and prayers, especially Bentley’s current medical staff, as well as Dr. Grewal and his office in Lebanon for continually supporting and visiting Bentley and their family. Mays is asking the community to continue sending prayers for her son and her family. 

“Just please keep my baby in your prayers,” she said. “Pray for him every day and every night. Just pray for him to come home. He can’t wait to come home.”