Special Books by Special Kids features another Sanfilippo family

January 5, 2024

Special Books by Special Kids (SBSK) is a nonprofit created by a former teacher of students with special needs who uses interviews 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 $1,300,000 to those featured on this channel through a combination of grants and fundraising,” explained founder Chris Ulmer on the Special Books for Special Needs YouTube page.

“Starting in 2016, 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 neurodiverse/disability community regardless of diagnosis, age, race, religion, income, sexual orientation, gender or gender expression.”

On January 4, 2024, SBSK released its latest episode featuring the Barris family in Florida. Belle Barris is 8 years old and has Sanfilippo Syndrome, a terminal, neurodegenerative rare disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die, often before the second decade of life.

Belle’s parents, Katie and James, are joined in this episode by Belle’s big sister Arden and grandparents. They candidly talk about how striving to enjoy every moment and be present, the shock of the initial diagnosis and how they rallied to move forward, living with anticipatory grief, and how hope sustains them. They also explain how Sanfilippo Syndrome is like dementia and Alzheimer’s, two adult diseases it is often likened to. Katie and James, along with Arden, explain how the sisters’ relationship has evolved as the disease progresses, moving from playmates and best friends to Arden being Belle’s protector.

SBSK kindly invites viewers to consider donating to Cure Sanfilippo Foundation to help fund research to find a cure for children with Sanfilippo Syndrome.

Special Books by Special Kids has previously featured other families of children with Sanfilippo Syndrome, including Sadie Haywood and Rowen Fernandez (who passed away in August 2023).

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