Welcome To Grant's Journey

Grant’s battle with Candle Syndrome starts back in June 2017. His symptoms were similar to hand, foot, and mouth disease, but due to how active Grant was we did not give it much thought. At the time Grant was two years old and was as active as any other two years old. It started becoming a concern when we picked him up from daycare one day and his teacher at the time made us aware that he had been laying down most of the day complaining of stomach pain and was running a fever. After monitoring him for four hours at home, we notice that when he laid flat on his back he had severe stiffness in his neck and it was impossible for him to sit back up on his own. His mobility had decreased, and he had difficulty walking. Also, his fever wouldn’t go down, and that’s when we proceeded to take him to the emergency room at the Phoenix Children Hospital in Arizona.

After a two hour wait at the Emergency Room, we came across a team of doctors that made us aware that due to grants symptoms he was being admitted for further testing by a group of specialist.  Blood work was done as we waited for answers. As parents, we asked ourselves what is so unanswered that we have to stay overnight? AS morning came, we were met by several specialists. To list them all would be too difficult for us, as they tested him for every known disease and were still unclear of Grant’s condition. One of the specialists that stood out, which was Dr. Sylvie M. Label. She let us know his liver enzymes had tripled over the normal level. Dr. Label very much understood our concerns and the pain that our son was experiencing with all the test he had done. Being told that there was a chance that your son could have Leukemia was my breaking point. But I knew that even with all my emotions, my son needed me and that this was not the end of it, that if it took 20 more specialists, then that’s what it would take. 

After a week of being in the Hospital as parents, we decided that we couldn’t put our son through any more testing. At that point, he had been put under sedation three days in a row to administer different types of test including a bone marrow test. My husband and I discussed several options with the Director of the Specialty Department as well as Dr. Label. It was decided to place Grant on 8 ml/day of Prednisone, a  Steroid, to assist in leveling out his Liver Enzymes. The steroid stabilized his liver enzymes as well as improve his movement.