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. Families with children who are disabled face many challenges that can be frustrating and overwhelming compromising the family’s health and life.
Big Little JC Association was born from the struggles of one of these families. They are Franz and Yvette Carstens family. They had a baby girl, Camila, and a few years later they were expecting a boy. After one routine sonogram, The Carstens found out that their baby had “Skeletal Dysplasia” of the most severe kind. With deep faith they moved forward with the pregnancy because terminating it was not an option.
Jesus was born on September 1st of 2010, breathing with certain difficulty but his lungs were healthy. The Genetics Team, made a final diagnosis: “Acampomelic Campomelic Dysplasia Syndrome”, Jesus was also born with severe scoliosis, a cervical problem and a condition called "tracheobronchomalacia," which is a syndrome that compromises the airways and makes them fragile.
Jesus and his family had to face incredible challenges that represented making the adjustments to their entire lives to accommodate their son’s disability. They did not only have serious emotional distress, but also had financial difficulties that affected every aspect of their lives. As they navigated the healthcare system to find help for their son Jesus, they also found what they called “their angels”. These were people along the way who helped them to ensure they accessed the services and support needed for Jesus and the whole family.
With deep faith and gratefulness, the Carstens family founded Big Little JC Association to become “angels” for others in need. The Big Little JC was born in December 2011. Since then Big Little JC has worked to help and support hundreds of families who have children with disabilities..
Big Little JC Association is a 501(c)3 nonprofit organization dedicated to empowering and improving the quality of life of children and young people with disabilities through counseling, education, financial support and advocacy