Gavin’s battle Hemophagocytic lymphohistiocytosis

Hello everyone, this is my son, Gavin. Gavin has unfortunately been through a lot. It first started with a rash all over his body, and I took him to urgent care and they told me that it was poison oak. But it never itched, which was weird…The next day he ended up with a high fever so I took him to his pediatrician, who said that it’s an allergic reaction and that he would be fine. The next day he started to vomit and have diarrhea and I took him to the ER at Marian because he was extremely lethargic and they told me his rash had nothing to do with his sickness and that he’ll be fine. Still no improvement. So we went back to Marian ER. Still the same thing, they just brushed it off. So I took Gavin home. The next day he was not able to move at all! I knew something wasn’t right, that motherly instinct in me wouldn’t let up. He couldn’t walk, he couldn’t move his arms, legs or neck. He couldn’t move anything. He was stiff like a board. It was so awful! I decided to take him to the Children’s Hospital in Santa Barbara, which is where we’re at now. They tested him for meningitis by spinal tap. It came back negative. Gavin came back positive for the entero virus. They were all very concerned so they did an MRI and CT scan which showed that the virus went into his brain and infected the splenium part of the brain which is the part that tells the body to move. Also, it showed he had infection in his lower back from the virus which is why he was in so much pain. At the time they diagnosed him with corpus callosum, an infection in the brain caused by viral virus. But that wasn’t it. His infection got worse and turned into a rare autoimmune disease called HLH/MAS. Basically his own immune system is attacking his own body now. So far it has attacked his brain, spleen, liver, blood cells, skin. Today we are going to start a new medication but that medication is very expensive. As of 09/15 we have spent 21 days here at Cottage Hospital and we are going to continue to stay here until Gavin’s lab values and bone marrow results come back to normal. With that being said our stay here, his treatments and medications are very expensive. I am currently unable to work, anything is appreciated even if it’s a prayer. This awful journey is not over yet. I will keep everyone updated. Please keep Gavin in your thoughts and your prayers. Thank you