gmhTODAY 21 gmhToday Aug Sept 2018 - Page 15

ultimately affects the brain, nerves, liver, spleen, bone marrow and in severe cases, the lungs. “It comes from the mother and the father. It’s the only way to get it,” Rebecca said. “We always tell Johnathan that we’re X Men, because we’re mutations. He likes that.” Johnathan has a much simpler way of defining his disease. “I have cholesterol in my brain and basically what I say to people is that the little vacuum in your brain that makes the cholesterol, mine broke when I was little.” The total amount raised by the yearly event is just shy of half a million dollars, with every dollar going directly for research of the disease. Having already participated in three clinical trials Johnathan has experienced drastic delays in the progression of the neurological symptoms of NPC. Allowing him a normal 12-year olds lifestyle. Soon to be a seventh grader at Solorsano Middle School, Johnathan is active in school. He loves performing and has appeared in 15 plays, and he enjoys video games and hanging with his friends. One of those friends, Tadan Cook, 14, and his mother Christine, consider Johnathan, “our super hero.” That’s a fair assessment of the young boy, who at the age of six days old was discovered to have an oversized spleen and liver. The cause of these abnormalities went unknown for three years despite countless tests and four blood platelet transfusions. The results revealed that he was in complete liver failure with no chance of survival. Amazingly Johnathan beat the odds and two months later was discharged from the hospital with a d