Sean, who is now 13, has never been afraid of taking on new challenges. He has always faced his disease head on. He is a strong role model for his younger brother, Cody, who is also afflicted with this disease. He works hard every day to keep pushing and advocating toward finding a cure.
Favorite Hobbies:
Basketball, video games, fishing, and Girl watching......mmm ( he is 13).
Proudest Accomplishment:
Participating in a double blind study that eventually led to going to Washington DC in January 2003 to help participate in the public comment portion of the FDA Advisory committee. This committee was reviewing the drug that was later fast-tracked and approved in April 2003 for treatment of MPS I.
MPS Heroes:
To the NYU neurogenetics staff and the one nurse who led him through the trial with understanding and great care, Pablito Bathan. He is someone that Sean will always respect and never forget. He affectionately called Sean his "pin cushion". He showed Sean and his family not only what it is to be a gentle compassionate soul, but also the ins and outs to every good pizza joint and family fun place in New York City! Sean wants to recognize and thank a few of the medical professionals who have touched his life in the last five years.... To Michelle, Dr. Pastores, Dr. Charria, Dr. Martin, Linda, Lisa, Rachel, Bernie, Amanda, Melissa, and of course, his wonderful home health nurse, Diana.... Thank you.
Words of Wisdom:
Never give up! Age is just a state of mind! (I'm waiting for your call, Mary Kate and Ashley!) hee hee.
Personal Diagnosis Experience:
Sean first showed signs within the first two years of his life with constant ear infections. He also showed signs in his hands, arms and legs when he was around 4 years of age. He later was sent to a genetics specialist at St. Louis Children's Hospital who diagnosed him at age 8. His brother and sister were tested and found out 2 weeks later that his brother, Cody, who was 6, also had the disease.
