OUR MAYA GIRL
Maya was your typical little baby until the 2nd week of December 2009 when she started spiking fevers. After 3 trips to the Pediatrician, with no stop to the fevers, we found ourselves on December 16th in the emergency room of Morristown Hospital.
Preliminary blood work pointed to the possibility of Lukemia, so baby Maya was admitted. After more blood work with no conclusive diagnosis, Maya had bone marrow extracted for testing on the speculation that our Doctor thought she may have HLH (Hemophagocytic lymphohistiocytosis ).
Our Physician, Dr. Mamoud, explained to us that her immune system was activated by an illness but never turned back off. Maya's own body was now being attacked by her immune system. Her liver and spleen had doubled in size and she was turning yellow.
We were transferred to Children's Hospital of Philadelphia (CHOP) where the diagnoses of HLH was confirmed by another bone marrow test. The course of treatment, (an 8 week regiment of chemotherapy, steroids and many other drugs), was started immediately.
A spinal tap was done to confirm the disease had not reached her nervous system. Maya's testing has shown she has the familial form of HLH, caused by a gene mutation. The only cure is a Bone Marrow Transplant (BMT), which will require about a month's stay in the transplant unit. This has all been way too much for a baby, who was 9 months old at the time of diagnosis, to go through.
The chance of having this disease is 1 in 1.2 million, so the Federal Government feels it is not worth funding to find a cure. We were very fortunate that our Doctor at Morristown Hospital was aware of this disease - many, many children have not been so fortunate. With the Lord's blessing, good doctors and a lot of luck, our Maya girl will be cured!
We would like to thank everyone for their generous prayers and support through this very difficult time. The overwhelming support from our family, friends, co-workers and community helps keep us going each day.
~Kris & Shana~