Jack Kacin is an extraordinary 6 year old boy. He has had anything but a normal childhood, traveling every month to the National Institutes of Health in Bethesda, MD. The NIH has Jack in their current research study with the experimental drug called JAGA which is treating him for the rare disease called CANDLE. CANDLE Syndrome is an autoinflammitory disease that was first classified in 2010, that presents with recurrent fever, arthritis like joint pain, liver enlargement, and delayed growth and development. That is a short list of the symptoms.
Jack's parents, Jeff and Kristi, are great people, as well as, parents, but they need some help. All of the medical bills and traveling to the NIH have been a huge financial burden on their family. Jeff has been working 7 days a week, just trying to keep their heads above water. Kristi is able to have a part time job working around scheduled doctor visits and blood draws at Children's Hospital in Omaha, NE. Immediate medial attention must be taken when Jack gets sick because his immune system is very low from steroids and the syndrome itself which complicates his disease.
Please find it in your heart to help them out. Every little bit will make a difference in Jack's life as well as his parents.