Tysen to Arizona for 2017 Joubert Syndrome Conference

Tysen was born in 2009 after a difficult pregnancy, in which his identical twin passed away. Several months after birth, he was diagnosed with a condition called Craniosynostosis. Tysen had surgery to remove the closed portions of his skull at eight months of age. After surgery, he began to exhibit signs of severe developmental delays. For more than a year, doctors and therapists tried desperately to determine what was causing his condition. At almost two years old, Tysen was finally diagnosed with Joubert Syndrome. A rare condition, individuals diagnosed with JS have an absence or underdevelopment of part of the brain called the cerebellar vermis, which can cause issues with balance, coordination, speech, vision and a variety of other conditions. In 2015, with the generous support of donors, our family was able to travel to our very first conference in Chicago. We had the great opportunity to meet so many other wonderful families like ours, and talk with specialists in the field. We hope to return next year and would love to share this experience with another family! In July of 2017, our bi-annual conference will take place in Phoenix, Arizona. Please support our efforts by purchasing a t-shirt and/or making a donation. Thank you so much for your support!!! Your kindness means so much.