Patient Stories Videos

This is the uncut video from our interview with the Kirbo family. Learn about all of the emotions involved in navigating Krabbe disease through the eyes of the Kirbo family. KrabbeConnect is forever grateful to Carlyle and Sloane for sharing their son's story to help further education and improve awareness about the need for additional therapies for Krabbe disease.

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Meet the Moore sisters. Raegan missed the window of opportunity for a potentially life-saving intervention because her formal diagnosis did not arrive until she was 9 months old. Raegan faced the heartbreaking challenges of severe neurological deterioration, loss of mobility, and a shortened life expectancy.

Meet Zoey, a joyful and energetic young adult fortunate to be diagnosed with Krabbe disease shortly after birth because of her sister. Early detection through newborn screening allowed her immediate medical intervention. Zoey received a life-saving stem cell transplantTypically this refers to a bone marrow transplant with the goal of replacing non-working cells with healthy working cells.  Bone marrow is a rich source of stem cells that have the unique ability to that halted the progression of the disease and significantly improved her prognosis. Thanks to the timely diagnosis and treatment, Zoey is thriving and enjoying a relatively normal life. Zoey's story underscores the importance of early detection and the positive impact it can have on children with Krabbe disease.

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We invite you to learn about the Kirbo and Ellis families. Both have been impacted by Krabbe disease. Cloud has a late-onset form of Krabbe disease and Cove has the infantile form of the disease. Cloud and Cove offer so much to their families despite their disabilities. Both children are surrounded by love and their families hold out hope for additional therapies to help further treat Krabbe disease. We invite you to learn more about Krabbe disease KrabbeConnect.org

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This video was utilized for the 2020, "A Million Dreams," Gala. A great story of a family impacted by infantile Krabbe disease. If this story moves you, help us reach a cure by donating at KrabbeConnect.org today.

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Dragon and Lana, parents of Nikola, sit down with KrabbeConnect, to share their Krabbe disease journey. Krabbe disease is a rare neurological disease that results from the loss of the protective covering (myelinMyelin is an essential material your body uses to surround and protect nerve fibers. sheath) surrounding nerve cells. Dragon and Lana, residents of Virginia, share their story with the hopes of further educating the medical community and others about the need for nationwide newborn screening to allow Krabbe disease patients to live their best life. KrabbeConnect extends their deepest gratitude to the Grujicic and Studio Center for this educational video.

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Do you wonder what it's like to care for a child diagnosed with infantile Krabbe disease? Check out this 6-minute view and visit krabbeconnect.org to learn how you can help families impacted by Krabbe disease.

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