On January 4th the new year took an unwelcoming change for our 5-year-old son Landon Alexander McMath.

Landon, a completely normal kid, was admitted to the hospital for a fever and then started having seizures lasting over 30 minutes. To prevent brain trauma, the doctors recommended an induced coma, this also gave doctors time to develop a firm diagnosis.  After 21 days, the tests were still coming back negative, however, our family had our breakthrough. Landon’s seizures and brain activity were finally under control and the doctors were able to remove Landon from a coma state. His first words were, “I can see you”.

After a month, we finally got the news! The doctors said, we typically find out the diagnosis during an autopsy, but it has been determined that Landon has a rare genectic disorder called  XLP, short for X-linked lymphoproliferative syndrome, Individuals with XLP are develop hemophagocytic lymphohistiocytosis (HLH). HLH is a rare disorder of the immune system causing uncontrolled inflammation that damages organs of the body leading to rapid death. The disease is seen so infrequently that only approximately 400 boys have been diagnosed worldwide, according to the XLP Research Trust. Unfortunately, many physicians are not aware of HLH. As such, it is often misdiagnosed and/or diagnosed too late.

If untreated, approximately 70 percent of patients with XLP die by the age of 10. Currently, the only cure is a stem cell transplant, coupled with chemotherapy.  The chemotherapy gets rid of the bad cells, while the stem cell transplant replaces the body with good cells.