Jack had a rare pediatric brain tumor that required lifesaving surgery when he was 17. After three years of suffering increasing pain he was diagnosed with another rare condition that creates dangerous high pressure in his brain and spine. In addition to causing debilitating constant pain, he will go blind in his 40's if not successfully treated. The amazing doctors at Johns Hopkins believe they can help him, and he is scheduled for surgery the week of September 17th - if we can get him there. His consultation in May was entirely on credit cards and our finances are precarious.
Before all this happened Jack was completely involved in High School, in spite of pain in his legs that doctors had dismissed. He was first in Orange Country in Academic Decathlon in his grade, a Life Scout, in Mock Trial and Model UN, and a member of the High School Theater Group called Off the Wall. He attended seminary at his church every morning at 5:30 am before heading to classes that included Advanced Placement. He loved airplanes and knew all the warplanes by heart -our vacations were to the Air Force Museum in Dayton OH and the Boneyard in Tucson.
Then everything started to fall apart. He had headaches, balance problems, and terrible pain in his legs. In August of 2011 his headaches became excruciating and one day he began to lose consciousness. His mother raced home from work to take him to the emergency room, where his stunned parents were told he had a large tumor in his brain and required life-saving surgery at the children's hospital. It turned out he had a pylocytic astrocytoma, a rare pediatric brain tumor that occurs in only 14 out of a million Americans and is listed as rare disease by the NIH.
We thought the brain tumor caused the leg pain he had suffered since he was nine years old, but it came back after his brain surgery. Three years and eleven doctors later he was diagnosed with his second very rare condition, Idiopathic Intracranial Hypertension (Psuedotumor Cerebri), affecting just 200,000 people in the entire United States of America. A neurosurgeon installed a shunt in his spine, but it failed and drained uncontrollably. On our first trip to Johns Hopkins the doctor sent him straight to the hospital for surgery to remove the broken shunt. He is now anxious for the next step - a stent in his brain that will allow his brain fluid to balance.
Jack has a great attitude - his philosophy is "I need to do it, so I will." In spite of his pain he is an Anime fan who loves to cosplay his favorite characters and is an avid drone flyer with dreams of finishing college and pursuing a career as a drone cinematographer. He works a part-time job when he is able and does everything he can to live a productive and positive life. Please help us provide him with the treatment that will allow him to live that life without unbearable pain.
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