OUR STORY AND IMPACT

Bubba's Light emerged out of a pursuit to empower and support the rare disease community. Established in South Carolina in 2020, we’re an organization driven by a deep passion to help others, and a strong foundation of lived experience. We believe that no one should be isolated and unsupported due to a rare disease diagnosis.

 

Their own son, TJ, also known as, “Bubba,” was born with a peroxisome biogenesis disorder, Zellweger spectrum disorder. Peroxisomal disorders are rare, genetic disorders impacting nearly every system in the body, and they are almost always terminal in early childhood. Care is symptomatic and supportive, with no treatment or cure to slow the disease progression.

 

First-hand experience has shown them how important it is to connect a community together. By connecting, we raise awareness and create hope. Through their own community connections, they were able to access extraordinary opportunities to ensure their own son received the best possible care. For years, in order to have been able to afford these opportunities, they needed the support of their caring friends, family, and community. Now, through Bubba's Light, it's their turn to give back.

 

To honor their son, they created Bubba's Light to continue helping others and bring a little light to families facing a devastating diagnosis of a rare disease, including rare cancer. As a 100% volunteer organization, all proceeds go toward helping people with rare diseases, including rare cancers. 

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The generosity of others has allowed Bubba's Light to connect other children and their families to critical resources and medical professionals that know about and research their rare disease. In South Carolina, the wait list for services can last for years. The founders of Bubba's Light know this firsthand, since they waited nearly ten years on a wait list, a time frame that exceeded their own son's expected lifespan. Families dealing with rare diseases are often forced into one-income households due to caregiving needs and the absence and delay in receiving these nursing and/or respite care services. These same families often must travel for needed medical care and incur expenses for accommodations, food, and parking. Bubba's Light founders again know first-hand about the impacts on families, since they too have had to travel two to five hours one-way to get Bubba's medical care in South Carolina, stay out of town for hospitalizations, surgeries, and at times out of state too. They understand that not everyone can turn to family and friends for assistance. Through Bubba's Light, they can receive the help they need and deserve. As an organization, Bubba's Light is also proud to offer education and support to students and young professionals learning about rare diseases.

 

Ted and Katie Sacra are the parents of “Bubba” and Co-founders of Bubba's Light, a 501(c)(3) non-profit, public charity founded in Myrtle Beach, SC. Ted Sacra has been a firefighter for over 30 years and currently serves as the Deputy Fire Marshal at Murrells Inlet-Garden City Fire Department. Katie Sacra currently works as the Director of Family Programs at the Global Foundation for Peroxisomal Disorders and has over 20 years of experience in healthcare administration, as well as advocacy. Both are lifelong learners who are dedicated to serving their communities and helping others.