Living Life to the Fullest with SA/CRS

by Jessica Rogers

I was born into poverty in Brazil, poverty so deep that after I was born I immediately joined the population of many thousands of children in Brazil who live in orphanages. Having CRS/SA is probably what saved my life. It was unique enough to mean that I got medical care and personal attention not normally part of an orphan’s experience. My unique condition drew enough attention from the local judge that he sought assistance for me from LIMIAR, a philanthropic organization dedicated to helping children in Brazil.

In the meantime, there was a woman in the USA who already had 4 adopted children with various disabilities. At a social gathering of families with children adopted from Brazil, she had the opportunity to glance through a binder full of photos of Brazilian children waiting for adoption. She came to a page with a photo of me, and soon the agency director was at her side recognizing that I would be a perfect fit for this family. At the time, this woman was not quite convinced. It’s expensive to adopt, and it requires extensive travel and paperwork, and she was already a single adoptive parent of four kids with special needs so she had a lot going on. But, it didn’t take long for the director to convince her to take on my medical care in the US under a temporary guardianship.

A month later, I was on an airplane bound for the USA. I joined what would become my permanent family. I was 14 months old and I weighed 9 pounds. My new mom brought size 24 month clothing to the airport, but it wasn’t until I was 4 or 5 years old that I grew into that size. Of course, I don’t remember any of this, but somewhere along the line I must have been pretty cute. My new sisters enjoyed pushing me around in a doll size baby stroller. So, that temporary guardianship turned into a completed adoption. My mom and I traveled back to Brazil when I was 24 months old to officially complete this process. I don’t remember that either, but I am so thankful to the people in Brazil for giving me a good start in life. By the time I was 3, I began to show that I had some academic skills. For one thing, I could read by then. My mom says she has been running to keep up with me ever since.

As far as SA/CRS goes, my condition is pretty obvious. I’m physically fully grown now but I am still less than 2 feet tall. My spine stops at about T-7, which is midway down my back. I weigh 47 pounds. I have one kidney, and I’m paralyzed below where my spine ends. When I first came into my new home in the USA, my legs were permanently fused in a Buddha like position with my knees sticking out to the side and the soles of my feet pressed rigidly together at the center. There was webbing from my ankles to my upper thighs. I scooted around my pulling myself along with my arms. My mom took me to Shriners’ Hospital for evaluation of my physical needs and the Children’s hospital urology for evaluation related to my kidney. When I was three, the decision was made to disarticulate my lower legs, which basically means removing them at the knee. If you remember, I was already reading by then, and I was fully aware of what was going on. I was all for it, and I told the surgeon exactly what I wanted him to do so that I could wear regular pants (ok, really small regular pants, but at least pants).

That surgery afforded me a lot more mobility. I could get around easier and wear clothing more easily. I even tried prosthetics for a while, and I walked well enough using prosthetic legs and forearm crutches, but it was cumbersome and slow compared to the speed at which I could “walk” around on my hands, or wheel around in my pint size wheelchair. Eventually the prosthetics went into a bag in the basement. I find that wheelchairs are just much more practical for doing the things I want to do in life. Lots of people think wheelchairs are limiting, but to me they mean freedom. Now I have all kinds of wheelchairs for all kinds of activities.

Other than the knee disarticulation, medically I have not really had any big issues. Although kidney infections do come and go, I haven’t had to have other surgeries. I think swimming and athletics keeps me very healthy because I’m very active and I have to eat the right things. I became very involved with wheelchair sports and swimming at the age of three, mostly because my older sister was involved in these activities and I wanted to do everything she did. She has a spinal cord injury. When I was 12, I made the transition from junior wheelchair sports to a focus on Paralympic swimming. At age 14 I was selected for the US Women’s swim team to go to the Parapan Games in Guadelajara, Mexico and I took a silver medal there in the 100 Meter breast stroke even though I was running a fever and battling a kidney infection at the time.

As far as school goes, I just go to a regular high school. In elementary school I played the trumpet in the school band, and in high school I joined the school crew rowing team as the coxswain. Our boat took 3rd place in the state finals. I usually take honors classes, and I have some great friends. There is no question that I will drive a car, go on to college, and choose a profession that matches my skills. I don’t have any educational limits.

Another thing I did when I was 14 was to found an organization for people with SA/CRS. I had met a few people who were like me at wheelchair sports events, but when I looked on the internet, all I saw was old and depressing information. I decided to set up an organization to change that perception. Being unique in physical appearance and having SA/CRS has not prevented me from doing anything I want to do. Of course, there are some things I need assistance with, but doesn’t everybody need a little help sometimes? Even though I’m very tiny, I can climb up onto pretty much anything. I can get pretty much anywhere I want to go in either my wheelchair or by walking on my hands. I have a regular life just like anyone else, except that I do get up at 4:00 AM to go to swim practice. Having SA/CRS has not prevented me from being anything I want to be. In fact, it’s probably provided me with opportunities instead, like swimming for the USA Paralympic team, and meeting people from all over the world through swimming and through the organization. I started having ‘meet ups’ with people all over the country. My message is, even though I’m still young, I’ve already had an amazing life and I want to make sure that other people with SA/CRS and their families have the support they need so that their lives can be just as amazing.

The International Sacral Agenesis/Caudal Regression Association is a 501(c)(3) organization.

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