HFCA Student's Self-Advocacy Reaches All the Way to Governor Pritzker
An important component of Holy Family Catholic Academy's (Inverness) nationally and internationally recognized curriculum and instruction is to inspire students in preschool through grade 8 to learn and demonstrate self-advocacy. HFCA Principal, Kate O'Brien explains, "Self-advocacy helps students develop strong problem-solving and communication skills. The more students practice articulating their needs, the more confident they become developing solutions and speaking up for their interests."
Fifth grade student, Jax Schnell has learned to advocate for himself and has taken this skill all the way to Governor Pritzker.
To his many friends, classmates, and teachers Jax Schnell is a very likable fifth-grader. The HFCA community knows and embraces Jax the person - not Jax the 10-year-old student with an incurable disease known as Mastocytosis or Mast Cell disease. According to his mom, Jamie Breeden, Jax was diagnosed with this rare, incurable disease in 2018 when he was 6 years old.
After a day of swimming in the July sun, Jax became lethargic, began running a high fever, and developed lesions on his skin. A trip to the emergency room indicated that both his red and white blood cell counts were abnormal. The family was referred to Dr. Timothy Brown, an allergy and immunology specialist at Lurie's Children's Hospital in Chicago where Jax was diagnosed with a form of Mastocytosis. The Schnell family's relationship with Dr. Brown has been invaluable. While little is known about Mastocytosis, what is known is that it affects each child differently, and Dr. Brown often consults with the National Institute of Health in dealing with his patients'cases.
This journey has been a tremendous learning experience for the entire Schnell family. Mom, Jamie has become a member of the Board of Mastokids, a not-for-profit dedicated to raising awareness of pediatric mastocytosis and encouraging research of this disease. She along with other Mastokids families petitioned Governor Pritzker to help raise awareness by proclaiming Oct. 20, Mastocytosis and Mast Cell Disease Awareness Day. Jax was a part of the petition which included his quote, "I want to raise awareness because I don't want anyone to miss out on fun stuff like recess, playing outside, swimming, and other sports. I hope that by raising awareness doctors can find medicines to help kids like me."
The group's determination resulted in Governor Pritzker issuing the proclamation.
Jax's efforts to raise awareness were embraced by the over 500 students, teachers, and staff at HFCA who wore purple on Oct. 20, and donated money to Lurie's Children's Hospital. Remarkably, It also resulted in an HFCA parent sharing that recognizing Mastocytosis & Mast Cell Diseases Awareness Day meant a lot to her as she too has been diagnosed with a hereditary form of Mast Cell Disease.
The events of Oct. 20 at HFCA were a testament to the power of self-advocacy and the importance of raising awareness of an incurable disease. Equally important, the day served as a valuable reminder to the Schnell family of the tremendous support they have at their school and parish community.
Says Jamie, "We are blessed to be part of such an amazing community! Jax felt so loved."