A Kid with a Deadly and Invisible Disease (Barth Syndrome)
Special Books by Special Kids
@specialbooksbyspecialkidsAbout
Interviews that are intended to create a more inclusive world. SBSK started when I was a teacher for students with disabilities. Originally intended to be a book written by my students, SBSK soon grew to be video interviews of disabled people of all ages and diagnoses. Since our beginning in 2015, I have interviewed hundreds of people across the world while providing over $2,000,000 to those featured on this channel through a combination of grants and fundraising. Starting in 2015, SBSK is now a 501(c)3 organization that seeks to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration. This multi-media movement supports the acceptance and inclusion of all members of the neurodivergent/disability community. -Chris
Video Description
Connor is diagnosed with a deadly and mostly invisible disease known as Barth syndrome. This genetic condition weakens every muscle in his body including the heart. Connor wants his friends to know that there is a reason he struggles to keep up while playing. Learn more about Barth syndrome at https://www.barthsyndrome.org/ Support SBSK at https://www.patreon.com/SBSK SBSK's Socials: http://www.instagram.com/specialbooksbyspecialkids https://twitter.com/chrisulmer https://www.facebook.com/specialbooksbyspecialkids
Empowering Care for Rare Diseases
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