A Rare Collection - Rare Disease Storytelling - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins

Once Upon A Gene

ONCE UPON A GENE - EPISODE 109

A Rare Collection - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins

There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme. Big brothers Noah Siedman, Grayson Skibington and Nash Hawkins share their sibling stories.

EPISODE HIGHLIGHTS

Noah Siedman

I'm afraid of losing my memories with my brother as I grow older. I'm afraid of letting his importance to me diminish in light of all of the new experiences that I get to have in his absence. My brother was a brilliant soul. His life meant growth, understanding and love for everyone. My name is Noah Seidman. My brother Ben had a rare genetic disorder called Sanfilippo syndrome and passed away seven years ago. I know for sure that I love my brother. And I know that I'm slowly figuring out how to be okay despite not knowing a lot else for sure.

Grayson Skibington

My sister Darby is two years younger than me and her diagnosis of Pallister-Killian syndrome is all I've ever known. For the first few years of my life, I was in the hospital a lot as the brother of a medically complex sister. I don't remember those days of course, but I have a scrapbook of pictures of me licking popsicles at the hospital. What I knew for sure back then, was patience equals popsicles. At age 17, I adapted to our family life by helping the best way I could. I stayed out of trouble, I did as I was asked, and I was positive and cheerful when the house needed it. Being a rare disease sibling can be complicated and messy. It can also be easy and wonderful. I don't take much for granted. I appreciate a helping hand and I will always be grateful for popsicles.

Nash Hawkins

Other homes don't have revolving doors of therapists. Other families go to restaurants and movies. We don't. However, my friends don't have a sister like mine who finds wonder in the mundane and whose belly laughs fills the room with joy, or a nonverbal brother who speaks volumes with his hugs and soul piercing stairs. Life with my siblings can be complicated and chaotic. Life with my unique family has taught me great things. I'm adaptable and resilient. Change, challenge and chaos do not faze me. I'm patient and empathetic. Because of my siblings, I recognize that disability is a diversity that colors our world in beautiful ways.

RESOURCES AND LINKS MENTIONED

https://courageousparentsnetwork.org/

https://curesanfilippofoundation.org/what-is-sanfilippo/

https://www.fam177a1.com

https://siblingsupport.org/sibshops/

https://pkskids.net/

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