Life with Dystonia
Donation protected
As many of you know, My 13 year old nephew Rafael Beras or as everyone knows him by (Rafaelito) has been recently and unexpectedly diagnosed with Dystonia. Impacting his life or better yet impacting his childhood making him want to just give up on himself due to constant body pain. However, Rafaelito is a ridiculously unique and a positive person and is not taking this lying down. He is inspiring to watch the way he's dealing with what he's up against, but difficult on a daily basis having to watch him suffer, a little boy with many dreams of growing up, go to school, be happy, and be like every other kid outside running around enjoying freedom and his childhood, but things drastically changed for him one day, life just turned upside down for him and little by little lost his balance in walking, talking, and functioning like he used too. At the moment His Father and My Sister have had to put aside their jobs and pause their lives to focus on what is more important in life right now (Their Son)... I created this page to try and get some help to help out with medical expenses and for their moving city to city seeking the best help they can get for my nephew Rafaelito and his conditions.
A better understanding to his illness:
-Dystonia is an illness which causes sustained or repetitive muscle contractions, spasm movements or abnormal fixed postures, which can cause pain, tremors and other uncontrollable movements - It can affect any part of the body. The symptoms continue 24 hours a day. For Rafaelito, he cannot control his facial expressions, arms, legs and back from spasming and twisting his head, jaw, legs, basically his entire body. It's difficult and has turned his life upside down in a very short period of time. He has gone from living a happy, healthy life, able to go to school, read, write and run to being unable to go to school, learning, running, now stuck in a wheelchair or bed and even struggling with the most basic of daily activities.
Rafaelitos most recent visit to his Neurologist was told that his CPK Levels is much more higher than what is typically seen among other patients, which is causing most of his muscles breaking down and basically leaving him stuck to a bed for long periods of time.
-When muscle tissue is damaged, CPK leaks into your blood. Therefore, high levels of CPK usually indicate some sort of stress or injury to your heart or other muscles. To test CPK, blood is drawn from a vein in your arm. In the hospital, a person's CK-MB level is often checked when they exhibit signs of heart attack.
This page was created to raising awareness of an unsung illness, giving a voice to those who are suffering from it, giving support for researchers trying to find a solution, a cure, and to provide My Nephew Rafaelito who is only 13years old with much needed treatment. Please share this page, anything is appreciated!
A better understanding to his illness:
-Dystonia is an illness which causes sustained or repetitive muscle contractions, spasm movements or abnormal fixed postures, which can cause pain, tremors and other uncontrollable movements - It can affect any part of the body. The symptoms continue 24 hours a day. For Rafaelito, he cannot control his facial expressions, arms, legs and back from spasming and twisting his head, jaw, legs, basically his entire body. It's difficult and has turned his life upside down in a very short period of time. He has gone from living a happy, healthy life, able to go to school, read, write and run to being unable to go to school, learning, running, now stuck in a wheelchair or bed and even struggling with the most basic of daily activities.
Rafaelitos most recent visit to his Neurologist was told that his CPK Levels is much more higher than what is typically seen among other patients, which is causing most of his muscles breaking down and basically leaving him stuck to a bed for long periods of time.
-When muscle tissue is damaged, CPK leaks into your blood. Therefore, high levels of CPK usually indicate some sort of stress or injury to your heart or other muscles. To test CPK, blood is drawn from a vein in your arm. In the hospital, a person's CK-MB level is often checked when they exhibit signs of heart attack.
This page was created to raising awareness of an unsung illness, giving a voice to those who are suffering from it, giving support for researchers trying to find a solution, a cure, and to provide My Nephew Rafaelito who is only 13years old with much needed treatment. Please share this page, anything is appreciated!
Organizer
Viviana Treviño-Beras
Organizer
Pasadena, TX