Special Books by Special Kids
Special Books by Special Kids
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Yesterday, I shared Ryan's story. In just 20 hours our community has raised $11,800 to help with his medical expenses.
Ryan was born with an ultra-rare genetic disorder called Xp21 deletion syndrome, which leaves him unable to walk or talk and in need of 24/7 caregiving. His single father, John, couldn’t find a daycare equipped to handle Ryan’s complex medical needs and was forced to leave his career to care for his son. For the past seven years, the two have faced unimaginable challenges together, buSpecial Books by Special KidsPost · 3 weeks ago
Yesterday I shared Daelyn's interview. She is one of only a few people in recorded history diagnosed with her ultra-rare genetic condition, a disorder of the FBXW11 gene. She communicates by repeating lines from her favorite TV shows and movies and has developed a language that’s uniquely her own.
Daelyn has learned to communicate by practicing speech on her pets, which includes horses and a kangaroo. It was amazing to watch her talk to these animals and made me reflect on the benefits of an animal/humaSpecial Books by Special KidsPost · 3 weeks ago
This summer and fall, I’ll be traveling across the northeastern USA and parts of Canada to film new interviews for SBSK. I’ll be visiting Boston, New York City, Philadelphia, Baltimore, Washington D.C., Montreal, and Toronto. If you live near any of these cities and want to share your story on SBSK, I’d love to hear from you. This opportunity is open to people of all backgrounds, ages, and disabilities.
To apply:
1. Email me at interview@sbsk.org
2. Include a paragraph or two about your story (Special Books by Special KidsPost · 1 month ago
Yesterday, I shared Lara and Lucas' interview. Lara and Lucas are siblings diagnosed with Cockayne syndrome, a rare and fatal disease that causes rapid aging. This is caused by a mutation to the proteins in the body that are responsible for cell repair. Due to this, the organs of those who are diagnosed with Cockayne syndrome age rapidly. Lara and Lucas' parents told me that their family focuses on the present day, living with joy, and creating positive and meaningful memories. One thing I've learned throuSpecial Books by Special KidsPost · 1 month ago
Yesterday, I shared Ali's interview. This was the 600th video on this YouTube channel. I never would have imagined when this started that we would one day surpass such a gigantic milestone. Thank you for your support over the last decade. I hope these videos have made the world a little bit more kind and inclusive.Special Books by Special KidsPost · 2 months ago
A few days ago I shared Sun's interview. He is diagnosed with Hunter syndrome and has regressed to the point he can no longer walk or talk at just seven years old. As I sat beside him and talked with a positive tone, Sun reached out to hold my hand and then kissed my hand. This was a great reminder to me that everyone is deserving of a friend, and a person that may not seem communicative outwardly can still have an enriched internal world and desire human connection. Simply put, just be kind to everyone.Special Books by Special KidsPost · 2 months ago
Yesterday I published Joe's interview. Joe survived a car accident that left him with 80% burns all over his body. Soon after, he was the first successful face and double hand transplant recipient in human history. He then met Jess, fell in love, and eventually got married.
We recently celebrated SBSK's 10 year anniversary on YouTube, so Joe's video is one of our first after entering SBSK's 11th year. Alyssa and I were debating if the last decade has gone by fast or slow. To me, it has went by at lightnSpecial Books by Special KidsPost · 2 months ago
Yesterday marked exactly 10 years since the very first SBSK interview was published on YouTube.
We’re incredibly grateful for the friendships, memories, and lessons this journey has brought us. It’s been the experience of a lifetime, and we wouldn’t trade it for anything. We uploaded a special video yesterday, sharing more of our thoughts on this milestone. There’s no way to fully express our gratitude in a single post, but from the bottom of our hearts: thank you for being part of this communitSpecial Books by Special KidsPost · 3 months ago
Yesterday, I shared Triston's interview.
After a traumatic childhood in foster care, Triston attempted to end his life in 2023. Doctors gave him a 1 in 500 million chance of survival, but he defied the odds. Two months later, he woke from a coma, blind, without a nose or ability to smell, and with bones from his legs used to reconstruct his jaw. Upon waking up, Triston struggled through a year of physical and emotional pain. But slowly, he began focusing on his recovery. Today, Triston is teaching himself Special Books by Special KidsPost · 3 months ago