The story behind Big Little JC
In this world some of us are born with an extra challenge: a disability. This does not define the people who have it, but it will have an impact in achieving their daily tasks, and the way they are done these adjustments are often a very complicated and frustrating process. Families who have a child with a disability face a lot of challenges that can be overwhelming, and sometimes they need to cope with conditions that compromise their health and life. For these families, the challenges represent a matter of life and death.
Big Little JC Association was born with one of these families. It began with the Carstens family. Franz and Yvette had a daughter, Camila, and they were expecting a baby boy. After one routine sonogram, she received a call from her Doctor telling her that something was wrong and that she was being transferred to the University of Texas High Risk Unit. They had a meeting with the Genetics Team and they explained that the baby had a syndrome called “Skeletal Dysplasia” and in his case, it was one of the most severe types. They gave them the option to terminate the pregnancy because it was very unlikely for the baby to be born alive, but this was never an option, and with an enormous amount of faith they decided to continue.
The baby was born on September 1st of 2010, and they called him Jesus, as a request from her big sister. He was alive, breathing with certain difficulty but his lungs where healthy. The Genetics Team, after consulting with geneticists all around the world, they came with a final diagnosis: “Acampomelic Campomelic Dysplasia Syndrome”, and besides this, he also suffered another gene mutation that was never reported before and they didn’t know what to expect. As a result from his condition he has “Severe Scoliosis”, a cervical problem, and a condition that’s called “Tracheobronchomalacia”, which is a syndrome that compromises the airway, making it fragile. He was discharged from the hospital on October 12th, and they were very frightened about what might happen.
A couple of weeks later at home, Yvette noticed that Jesus was pale and had trouble breathing. They rushed to the hospital and after a lot of tests the Doctor convinced them that Jesus needed a tracheotomy with a ventilator, because he was going to stop breathing anytime. They decided to do it, and a few days later he stopped breathing for the first time. He made it through, thanks to this procedure. Jesus has the tracheotomy and the ventilator so he can breathe, and a G tube so he can be fed. Jesus became then a Medically Dependent Child.
Jesus’ family had to face the situation and the challenges that represented making the adjustments in their lives to adapt to their son’s disability. It was not only the emotional distress, but also the financial impact this was having in their lives. They needed to know how to manage their son’s condition of being medically dependent, and all the complicated process inside the American healthcare system in order to get everything Jesus needed to live. In this path, they had the luck to find people, who they called “their angels”, to help them get everything together and in place. Jesus is 18 months old now, and he is a very happy boy that receives a lot of love from his family and friends.
Because of all these struggles and search for support, Jesus’ parents felt that they wanted to do something for families that need to go through this entire journey. This is why Big Little JC Association was created in December 2011 from parents that know the real meaning of support and the importance of not feeling alone and knowing that these situations can get better.
Big Little JC Association is a Non-Profit Organization that will guide families with medically dependant children to have them fulfill their everyday needs and find the best care for their children. With your help we will be helping them, not to get back on track, but to build a new one, where they give their children the quality of life they deserve.
In order to help we already started our fundraising activities. The main event is our ANNUAL 5K RACE, which will allow the whole family to participate and get involved. It will also give you the opportunity to collaborate with this beautiful cause.
Your help would be highly appreciated, and it will make an extraordinary difference for these families. With your support we can fulfill their biggest dream: to be able to take care of their children and enjoy together the gift of life.
Thank you very much for your support, we look forward for you to be part of the difference we want to make.