DOWNINGTOWN PA - 03/21/2017 (PRESS RELEASE JET) — Hi All,
I am 25 years old and I have Hypoplastic Left Heart Syndrome; have had three open heart operations and one open chest. Yes I had also the Norwood operation as well, and it was done by Norwood himself. I had them all done at CHOP in Philly. In addition I have Hydrocephalus, controlled by 3 catheters inserted in to my head that come together to make one shunt that then drains in to my Left plural cavity . I also have Scoliosis somewhat corrected by a rod and 4 screws. The only thing though is that they put the rod and screws in the front of my spine instead, it was to help bleeding. But, because they did that they could not go up as far as they would have liked to, because of my heart. The last two things that I have are Mild/Mixed Cerebral Palsy, along with a Learning Disability that they classified as extreme, for the first 6 years of education, my school district, school, and teachers said that my Learning Disability was too extreme to work with and therefore help to improve. It was not till I was in 7th grade that they came to realize that my Learning Disability was not as extreme to work with and therefore help to improve, as they thought it be. I spent my whole education receiving special education services. Throughout my life I received OT, PT, Speech, Vision, and reading therapy, in other words assistants so that I could learn to read, In High School I also received mobility therapy, in other words help to learn how to cross the street properly along with learning how to take public transportation. People have read about me and my medical conditions and my Learning Disability on paper and they automatically assumed I was too medically fragile and that my Learning Disability was too extreme to work with and therefore help to improve. Needless to say I spent a lot of time proving them wrong so that they would work with me despite their fear and un-want. I was able to show them that I was not this fragile, walking dead and extreme Learning Disabled that they thought I was.
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