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Hi,  My Name Is

Jeremy

AGE:

7

Years Old.

Motto:

“Believe in yourself”

Diagnosis:

Craniosynostosis

High School Team:

Dream Team:

Boston Marathoner Jeni Raymond and the Regents School of
Austin Football team

Favorite Things:

After his eyes became shaky at 3 months old, Jeremy’s eyes stopped tracking movement one month later. Doctors in Houston and at the Cleveland Clinic weren’t successful in finding any type of diagnosis but warned his parents that he was quickly deteriorating and most likely would not live past one year. At 9 months, he had stopped smiling altogether and either slept or cried nonstop. A CT scan presented Jeremy with a Craniosynostosis diagnosis. This is a birth defect that causes all of the skull plates to fuse together, preventing the skull from expanding to accommodate brain growth. Jeremy underwent surgery to relieve the cranial pressure at 13 months old, and his vision returned but his muscles remained extremely weak. Doctors in Dallas at the National Institutes of Health and Duke University guess that Jeremy has an endocrine disease because of the involvement of both bone and muscle. His condition causes his muscles to be so weak that he cannot walk, talk, sit or lift his head for long periods of time. He has constant headaches, nausea, neck and joint pain. Jeremy has had more than 40 surgeries, including 5 major skull surgeries, 2 heart surgeries and 8 on his eyes. He taught himself to read and write, which was a huge surprise to his family. He works extremely hard at daily exercises to strengthen his muscles and is working hard to find an easier way to communicate with everyone around him. Jeremy’s 2015-16 Champion Teammates are Boston Marathoner Jeni Raymond and the Regents School of Austin Football team. Go team Jeremy!

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