contributed by Justice Rickenbach
My name is Justice Faith, and I am 20 years old.
I have:
Prader-Willi syndrome
Narcolepsy with cataplexy
Scoliosis
Gastroparesis and
Central adrenal insufficiency
I have been dealing with many health issues my whole life.
Because of my rare conditions, I have many fears. I worry about my health, friends, and, most of all, my future. Rare means not many doctors or people understand my condition. When I get sick, I may not be able to find anyone to help me.
Finding the right doctors is hard, and as an adult, I had to start all over. No matter how much we explain my diagnosis, the school struggles to understand. It is not that they don’t try; it’s that they just don’t get it. They have never had a kid with all my diagnoses before. This causes me a lot of stress, which causes me to have a lot more health problems. Unfortunately, I end up missing a lot of school and it has been hard to catch up. Most young adults are living independently and enjoying life, I can’t do that. I can’t make plans for the future right now; I am not sure exactly what the future holds for me. I am hopeful that medications will be available soon that will allow me the freedoms my peers have.
Having a lot of medical issues has not stopped me from doing what I love. I may need to stop and take breaks or do things a little differently than others, but I manage. Riding horses, weightlifting, long bike rides, hiking, reading, and art are all some of my favorite things to do. When I was born, the doctors told my parents most of these things would not be possible, but I proved them wrong. I have the most supportive family and friends who believe in me and encourage me; because of them, I will do everything I put my mind to.
Having a rare disease has taught me that not everyone in the world is accepting and that I will always need to fight for everything I want. I have learned that people can be mean, especially if they don’t understand something. I have learned to sit through countless doctor appointments and therapies, and I have had more tests done than I can count. I have also learned that every person is unique, every person has value, and everyone has a story to share; we just need to listen.
Growing up rare has given me opportunities that I would have never had if it weren’t for my diagnosis. I have friends all over the world, and I have been fortunate enough to have traveled to see some of them. I have met people with other or similar rare diseases who have shown me courage and how to smile no matter what happens. Growing up rare can be difficult but it’s all about attitude. I know that being positive and sharing my story with others will give someone else the hope they need.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.