“I am Rebecca. I am caring and capable. My life is full of adventure. I’m confronted with obstacles, but I still find a ways to stay positive. I’ve discovered a fullness of life by living in the moment. Come into my world and experience life through my eyes.”
I was born with a genetic form of Arthrogryposis called Multiple Pterygium Syndrome, aka Escobar Syndrome. It’s recessive, meaning my parents had a 1 in 4 chance of having a child with this condition with each pregnancy. It was a delivery room surprise. I was pretty healthy when I was born- just VERY tight. I didn’t require any oxygen or other interventions. I stayed in the NICU for a few days for testing to make sure I was stable and figure out what was going on. Therapies began right away as well as other testing/appointments.
At 11 months old Dr. Judith Hall (Geneticist and world expert on Arthrogryposis) confirmed the diagnosis of Multiple Pterygium Syndrome. She predicted that the most important thing to watch was my scoliosis and she was right. Despite aggressive bracing by age 4 I had a roughly 90-degree curve and underwent an anterior/posterior spinal fusion. Even though my surgeon was unable to gain any correction, thankfully the surgery was successful in preventing any further progression. I’m able to walk short distances without assistance but have had some sort of assistive device throughout the years. When I was little it was scooter. Scooter went everywhere with me and allowed me to get around more easily. I also used a walker. Then in about 3rd grade I started to use a power chair most of the time. It was also at this time that I started needing oxygen during the day and a BiPap with a mask at night. Even though my health was iffy, I loved school. I was in general education until graduating high school in 2007.
After that I went to the University of Michigan Dearborn where I was in the Honors program and majored in Communications. I also double minored in Political Science and Law & Society. The other major thing I did during my time at U-M Dearborn was start a student organization called The Alliance for Disability Awareness. We held three major campus wide events and a few smaller fundraisers and events. After graduating with my B.A. I went on to University of Michigan in Ann Arbor for graduate school. I lived on campus in a dorm while obtaining my Master of Social Work degree. That was quite the adventure! There were definitely ups and downs with this experience but it was worth it. I am very thankful for the supports that U-M was able to provide (paratransit bus service to and from classes as an example) and the outside supports I was able to set up (aides to help me overnight).
After graduating my M.S.W. in the Spring of 2013 I moved back home and started job hunting. It was also around this time that my health got unstable again. My quality of life was low. I was diagnosed as having fructose malabsorption (a GI issue) and Adrenal Insufficiency (an endocrine disorder). I also passed a kidney stone and my chronic pain levels increased. My pain and fatigue are still difficult to manage. My Adrenal Insufficiency is fairly well managed but my stress tolerance has definitely been lowered. This complicates my personal and professional life. I work part-time for The University of Michigan and volunteer with a number of different groups. I haven’t needed oxygen during the day since graduating high school but use a ventilator at night with a face mask. Currently my biggest struggles are pain management, fatigue, and managing the Adrenal Insufficiency. I have good and bad days. It can be hard because sometimes I want to do more than my body can tolerate so I feel frustrated. But, I’m doing my best to stay active while respecting my limits.