Name: Jack (AKA Sweet Baby Jack-Jack)Age of Diagnosis: 3 months old
Date of Diagnosis: October 8th, 2020
Angel-versary: March 10th, 2021
Diagnosis: Primary HLH
Genetic Mutation: UNC13D
Location of Treatment: Cardinal Glennon in St. Louis, MO and Cincinnati Children's
Despite being born in a pandemic, Jack and our family lived a very normal first two months of his life. Jack was your typical newborn, that occasionally had to go on stroller walks at night to help soothe him. In late September of 2020, Jack went into the hospital at Cardinal Glennon as he was having high fevers. After every test imaginable came back negative, the doctors thought it was something viral and sent us home a few days later, thinking it would pass. Our world was rocked when Jack had to return to the hospital for high fevers when he was three months old. They discovered his spleen was double the size it should be. Doctors speculated that Jack either had HLH or Leukemia and was admitted right away. Jack was diagnosed with HLH, in October 2020. Jack would need a bone marrow transplant. Jack stayed at Cardinal Glennon until late November of 2020 and then took his first flight to Cincinnati, where doctors specialize in HLH. Jack was allowed to go outpatient for several weeks before he had his bone marrow transplant in early January. His body accepted the transplant, but due to breathing difficulties Jack had to be intubated and sent to the PICU. After a long time of having the breathing tube in, Jack started to get better and was able to be extubated. Jack was making great strides, when at times we noticed his breathing was labored. Two weeks after being extubated, and almost being released from the PICU, Jack had to be intubated for a second time. The doctors were not for sure if it was adenovirus or something else causing the breathing issues. On 3.10.2021, Jack passed with his mom and dad by his side. There is no strongly effective treatment for adenovirus post transplant, which is why Jack's family continues to fight and raise awareness about HLH.
