On Oct. 18, 2011, a bright-eyed 21-year-old couple brought a seemingly healthy baby boy into the world. However, all of the excitement and dreams that the young couple from Little Elm, Texas, harbored on that day would drastically change in the months that followed.
Lucas Scott Chappell was a sweet and bubbly little infant until he was approximately 4 ½ months old. At this time baby Lucas’s motor skills started to decline and there were noticeable differences in his personality. Unsure of what to do, parents Lauren and Scotty rushed their little bundle of joy to Children’s Hospital in Dallas, where they began the long, stressful and tedious process of unraveling the mystery that would turn out to be their worst nightmare.
Through countless blood tests and MRIs, the truth was finally brought to light. Baby Lucas was diagnosed with Krabbe disease, also known as globoid cell leukodystrophy, which is a degenerative disorder rooted in the nervous system. In short, an infant with Krabbe disease is unable to properly grow myelin, and therefore the nervous system is unable to sufficiently tell the body how and where to move.
Essentially, the victims of this horrible disease will typically see cases of extreme irritability, problems being fed, weakening of muscles, really stiff posture, high fevers, and in some cases seizures. All of this will take place before their first birthday. Here in the United States, Krabbe disease affects roughly 1 in every 100,000 children, and has no recorded survivor over the age of 8.
Through the help of family, friends, and supportive third parties, the Chappells have been able to do everything possible and necessary to keep their child comfortable and content during his battle with Krabbe disease. The use of Facebook and other social media have provided them with an astounding support group that is scaled much larger than just the United States. By sharing their story with couples in the same boat, Lauren and Scotty Chappell discovered an incredible specialist in Pittsburg who has equipped them with all of the knowledge and tools that they need to be the best parents to baby Lucas.
Although Lucas is in the last phase of his illness, Lauren and Scotty have devoted their lives to raising awareness for Krabbe disease and other leukodystrophies. Their hope is to petition public hospitals to implement a post-birth screening for the gene that causes leukodystrophies. This way, parents can better prepare themselves for the long road ahead, instead of being slapped in the face with the disease five months into their child’s life.
To hear more about Lucas’s journey and the efforts to cause awareness for his disease, visit: http://www.gofundme.com/LoveForLucas
About Millie Day
