Norma
Norma is 23 years old. She lives in Huambalo, a small town just outside of Ambato in central Ecuador. She discovered she had a brain tumor at the age of 12. Due to the location of the tumor, only about 70 percent could be removed.
I met Norma this year when I joined a group of assistive technology professionals who were volunteering in Ecuador through the CITTI Project (cittiproject.org), a fiscal project that FSD has sponsored for the last several years. 10+ years later, Norma is a success story simply by being alive. However, she continues to have lasting effects from her tumor--her mobility is very impaired; she walks slowly with a cane. Her hand movements are labored and she remains quite stiff. She experiences dizzy spells, stomach aches, backaches and more. Yet, in spite of all this, she possesses such a positive attitude and is so passionate about life and learning, everyone around her is drawn to her...including me.
I was so incredibly impressed by Norma, that it became almost an obsession to do whatever I could to help her. Recently, she managed to enroll in a distance learning program in Ambato and once a week she goes to town to a school there--she is currently in the first year of high school there. She happened to be going to Ambato on a Wednesday when I was going to be in Ambato as well, so Gladys, FSD's program director, picked her up from school and we brought her to see a neurologist to get an opinion on what could be done.
While some medical care is free in Ecuador, the reality is that most medical things have costs. Norma couldn't afford to see a specialist and her family hasn't been all that supportive of her. She is one of 12 children and the impression I've gotten from her is that a sister is her primary caregiver and is really the only one looking out for her. The neurologist was moderately optimistic and said that fact that she is alive after 10+ years means that the surgery was successful. Her main needs are physical therapy and a new MRI to see what is going on with the part of the tumor that remains as well as examine the current situation of the stunt that was put in her at the time of her surgery.
We scheduled a new MRI for her for the following wednesday and are in discussion with both the organization in Huambalo that offers physical therapy as well as an organizatio in Ambato that might offer her more options. Money was raised for her last year, by the CITTI group, to help with the costs of such things, and I'm committed to helping her, as I'm sure many in the CITTI group are, when that money runs out.
It's hard to explain in words the spirit of this young woman. When I was in a taxi later that day with someone from FSD's site team in Ambato, that person turned to me and asked, 'why her...I mean, there must be thousands of people like this in and around Ambato alone'. This is a true statement. There are probably thousands of people in the area with similiar disabilities, hundreds of thousands, if not millions, around the world. Many of these people have the support of their families. Many do not. Many are incredibly poor and will never have the resources to adequately address the problems they have and will encounter because of their disabilities.
I know that I can't help all of them and I know the CITTI project will only reach a tiny fraction of them. I can't help but think of the starfish story, of the man who would walk down the beach and throw as many stafish as he could back into the water...someone asked him why he bothered when there were countless ones on the beach. He responded, as he threw one back into the ocean, 'well it matters to this one!' I know it matters to Norma. She is so appreciative of the support that is offered to her. She has remained optimistic despite her very real challenges and her ongoing pain. She is engaging and full of life and is committed to living her life to the fullest. Everyone that she meets is touched and I know many that are committed to making sure she has as many opportunities open to her as possible. For if anyone deserves the best that life has to offer, it is Norma.






