Meet Jason

Project Onipa A was inspired and launched in honor of Jason Testa. Jason's upbeat personality is contagious to everyone around him. Jason touches the lives of everyone he meets and we are truly blessed to have him in our lives.

When Jason was just two months old he was diagnosed with what is known as the disease Tuberous Sclerosis. Many do not know or realize that Tuberous Sclerosis is a very rare form of Autism. Jason became very sick because of the disease and doctors were unsure what was wrong with him. Soon tumors began to develop throughout Jason's body consuming of 25 in his brain, one on each of his lungs, kidneys, one on his heart, liver, and right eye. Jason was unable to move on his own. The disease began to take over Jason and his family just as the tumors began to spread throughout Jason's body. Doctors informed the Testa family that it was unlikely that Jason would live past the age of five. But Jason and his family prayed and held on to hope that Jason would make it past his toddler years. Doctors informed the Testa family that even if Jason did survive he would never function at the level of other children his age because the disease causes developmental delays. Jason beat all odds as he made it past age five and into is adolescent years. But as Jason grew older his disease grew stronger. Jason was hospitalized multiple times but because the disease is different in every patient there are not many medical advancements concerning Tuberous Sclerosis. Doctors soon informed the Testa family that school would be out of the question for Jason and to just go on living as they were and as if any day could be Jason's last. But Jason and his family refused to hear what the doctors had to say. Jason went to school with other children his age who functioned at his level. He graduated middle school and moved onto high school. When Jason turned 17 he obtained his driver's license, something that many medical professionals declared he would never be given the opportunity or be granted the mental capacity to do. In the spring of 2000 Jason graduated from high school. Even though Jason's story is an amazing one at that his battle with his illness was in no way finished. Soon after Jason graduated the tumors were multiplying in his brain. He began experiencing terrible headaches. Jason was once again hospitalized so that doctors could plant a shunt into his brain to drain all fluid from the tumors that were forming. Two years ago Jason had to undergo another brain surgery when medical professionals discovered a tumor pressing on Jason's brain that they were unable to operate on. Doctors planted another shunt into his brain to drain more fluid from the tumors. Last year Jason had to undergo another surgery to remove one of his bigger tumors that was putting pressure on his brain. In total Jason has over 20 tumors in his brain alone. Through hope, faith, and courage Jason survived and is here to tell his story.

Jason will be turning  29 years old at the end of August, 2011 but functions at the level of a 12 year old boy because of his disease. Even though Jason faces many challenges every day he never takes life for granted and loves the world and people around him. Jason refers to his brain as a theme park LOL! Jason explains this analogy as the tumors are the rides and his shunts are the water slides because the fluid drains to the stomach from the brain. So when he feels pain he simply says the water park is getting busy!!! Jason has such a positive outlook on life given the cards that have been dealt to him and his family.