Josiah was born in September 2002, he was a healthy baby until he was 8 months old.  We noticed red spots in his scalp something like ant bites.  We took him to his Pediatrician and even to him the red spots didn’t look familiar so he referred Josiah to a Dermatologist, he took a biopsy of the red spots in his head.  I took Josiah back two weeks later for the results and he diagnosed him with Congenital Self Healing Histiocytosis, a disease that he wasn’t even familiar with at all. The doctor told me to keep and eye on the dots because all he knew was that they would get big like a size of a quarter.

 

At the beginning of July we noticed Josiah not been a normal 9 month old, his skin and eye color started changing, didn’t have appetite, the red dots were spreading all over his body, started having infections, fever and loosing a lot of weight.  In October, his Pediatrician send him in for labs and his white blood cell count & platelets had came back elevated. The doctor wanted to repeat the labs again in November. Unfortunately the results were the same. Josiah's doctor was very concerned about his labs and also the continuous infections and fevers.

 

 In December 2003, he referred me to a Hematology/Oncology doctor. Josiah's appointment with this doctor wasn't until the end of January 2004.  On December. 29^th Josiah had more fevers, we took him to the ER.  There they ran a lot of blood test and gave him antibiotics.  His fever went down and apparently everything was fine.  He was discharged from the ER and went home   As soon as we got home, my sister-in-law told us that their was a mistake in Josiah’s labs and that we had to go back to the hospital, something with his Liver functions, they were kind of elevated.  We took him back and he was admitted.

 

Dr. Thomas saw Josiah the following day and order more test and biopsies, first he had a bone marrow biopsy. According to the Dr’s he was having all the symptoms of Leukemia, that test came back negative. Then he had a liver biopsy and that one came back with Langerhan Cell Histiocytosis, apparently that was the cause of Josiah’s color change, fevers and infections.  We were told that it was a rare disorder in the blood and that 1 out of 200,000 kids are diagnosed with it.  The only treatment was Chemotherapy for a year,  along with other steroids and medicines required of cancer patients.

 

We were devastated and worried that our son wasn’t going to make it thru the treatment.  After a few months of treatment his labs wouldn’t get any better so he was referred to the Gastroenterology doctor and that’s when Josiah was diagnosed him with Primary Biliary Cirrhosis, Josiah started having severe itching and color changing drastically, he was going to need and liver transplant.  On November 13, 2004,  he was officially placed on the waiting list for a Liver.  On November 27 about 2:30 a.m. Josiah woke up vomiting blood, we rushed to the ER and two varices busted and had to be intubated to try to close them.  That gave Josiah more points in the list.

 

At the end of November,  we were notified of a liver for Josiah, we were so happy and scared at the same time.  He was transferred to the University Hospital and we waited for the liver.  Since his transplant Josiah has been fine.  We thank God for Dr. Mejia (transplant surgeon), Dr. Neigut and their staff for the wonderful care they have given Josiah.