Starting at the age of 8 months old, Maya began having fevers. Not your typical fevers, but fevers that would reach 105 – 106 degrees. These fevers had Maya in the pediatrician’s office hundreds of times and continued from her first, through her forth birthday. The most disturbing part about the fevers was that no real reason for the fevers could be found. This was especially hard on Maya’s mom who is also a doctor. Although she was in the medical profession herself, Maya’s mom had no luck finding the answers she longed for.
Eventually, one of the doctor’s treating Maya mentioned HLH or Hemophagocytic Lymphohistiocytosis. Maya’s mom immediately took to the computer and started doing research. Her search pointed her toward Dr. Filipovich and Cincinnati Children’s Hospital. Dr. Alexandra H. Filipovich is a leader in the field of HLH study. Her tireless devotion to finding a cure for HLH is unsurpassed and is the reason why so many insist on Cincinnati Children’s for treatment.
Although, Maya’s family had access to award-winning hospitals in their home state of California, they decided that going to Cincinnati Children’s was their best option. This was especially evident to Maya’s mom after hearing from several families who had come from other parts of the country to take part in the bone marrow transplant services offered by the HLH team in Cincinnati. The consistent message she kept hearing was, “if your child has a diagnosis of HLH, you must come to Cincinnati.”
Maya received two bone marrow transplants. The first was rejected, but her second was a success! She is now cured of her HLH diagnosis, has healthy bone marrow, and lives a healthy life. Maya is an HLH survivor. Get more information about Maya by visiting Cincinnati Children’s HLH family support page at http://www.cincinnatichildrens.org/service/h/hlh/family-support/.
More About Cincinnati Children’s Dr. Alexandra H. Filipovich
Everyone that has worked with Dr. Filipovich understands one thing, her devotion to understanding HLH or Hemophagocytic Lymphohistiocytosis. Dr. Filipovich first encountered this mysterious disease before it even had a name. It was thirty years ago and her undying attention to shedding light on HLH has never ceased. According to Dr. Filipovich, “It was one of the most fascinating and challenging areas of medicine I’d experienced. But it wasn’t anything we had learned in training. No one knew what it was. It hadn’t even been described in the medical literature.”
Now, Dr. Filipovich is one of the leading authorities on HLH and the director of the Immune Deficiency and Histiocytosis Program at Cincinnati Children’s. Filipovich and her team focus on understanding HLH through research and providing the best clinical care to their very special patients. They additionally provide educational services for pediatricians so that HLH can be diagnosed in its earliest stages and assist families of those diagnosed with this life-threatening disorder. The HLH Center of Excellence at Cincinnati Children’s undoubtedly provides the most comprehensive HLH services in the United States.
If you would like more information about HLH, how you can help, or want to make a referral, there are many resources you can use. First, you can contact Cincinnati Children’s Hospital directly by visiting them online. Or, you can get more information from the Matthew and Andrew Akin Foundation. Both of these organizations want patients with HLH to receive the care they need and work together to make sure that happens. Make sure to watch Maya’s story below!