Monday, July 17, 2017
My Brother, My Protector By Brittany Stevens
By Brittany Stevens
My name is Brittany Stevens, and I’ll be 27 in August. I was born with Nager Syndrome, a rare craniofacial anomaly which features missing bones throughout the body, microcephaly, a short chin/jawbone, bilateral hearing loss, and about 25% of us have Intellectual Disabilities. I’ve had 37 operations, including a C1-C2 Spinal Fusion, bone added to both feet, 14 sets of ear tubes and had my chin lengthened.
The chin surgery truly changed my life! Growing up with a short chin, weak palate and thumbs that couldn’t bend was challenging. My speech was limited and I have intellectual disabilities. During my early years, I was taught some basic sign language. My family, especially my younger brother Quinn Stevens, had to pay close attention to me in order to learn what I needed or wanted. My brother probably understood me better than my mother...and she really knows me! Ultimately, having chin and gland surgeries allowed me to stop excessive drooling, gave me the ability to eventually work, but more than that, I gained a voice, and haven’t stop talking since!
Living with Nager Syndrome has so many challenges, including seizures, and so little was known about this Syndrome in the early 1990s. Because of the multitude of complex medical issues in my early years, I received more attention than my brother. He was scared at times, but he eventually understood that my rare syndrome was just a part of my life, our lives.
Education is critical for special families. I attended Early Intervention at Easter Seals, and was blessed to attend Philadelphia Public Schools, via the Life Skills Program. The combination of great, creative special education teachers, awesome family support, and a Mom who became my fiercest advocate, I blossomed into the unique woman that I am today. I presently work at the PATH Workshop (People Acting To Help), participate in all kinds of activities via Special Vacations, an organization that provides unlimited events for adults with disabilities, and I go away to adult camp one to two weeks every summer where I continue to learn work and life skills (Carousel Connections Camp).
Foundation for Nager & Miller Syndromes families at the annual and biannual retreats! The retreats have allowed my family and I to see the country and make lifelong friendships. Each year each retreat is my favorite. I had the opportunity to meet Cher, and many other wonderful people over the years. Even better, my mother and doctors have learned how to keep me healthy. To our new CCA families, “Welcome,” and to all the families I know all too well, I look forward to tickling and hugging you soon!
Written by Harlena Morton
Mother/Legal Guardian of