Living with Amniotic Band Syndrome: Finding Your Tribe

Discovering the name for my condition was mind-blowing. Imagine living your whole life not knowing what had happened to you. Then one day, a doctor speaks three words that literally changes your life: Amniotic Band Syndrome. That’s what happened to me. The day that I discovered my tribe was memorable. 

Amniotic Band Syndrome and other related conditions have linked me to so many creative and kind people. Tony Memmel was one of the first persons with a limb difference that I met. He is a singer-songwriter born without his left forearm and hand. He taught himself how to play guitar and his music is amazing. My family and I traveled to Knoxville, TN and met him and his wife. We formed an instant friendship. Later he wrote the theme song for Zippy’s Club Play and performed the song at the play. You can watch the video here

As a little girl, I always desired to meet other people like me. A few years ago, I attended a picnic where I met other people with limb differences or who are advocates for limb differences. Molly, the founder of The Lucky Fin Project, was there with her family. It was great to see her in action and see first hand how she strives to help the limb difference community. It was also great to meet her daughter Ryan, the reason she started the non-profit organization. I also got to meet Jen and Jordan Reeves, who has a blog called Born Just Right and also endorsed my book “Zippy’s Big Difference”. Recently, Jordan has been in the news for her cool prosthetic. You can read the article here.

It’s always a pleasure to meet the Haack family. Ryan and his family are such a joy to be around. Ryan has a blog called Living One-Handed and a book called “Different is Awesome“. 
Yoocan is the world’s #1 empowerment site for people with disabilities and their families. Their community reaches over one million people in 100 different counties. Yoocan started with a real story. When the founder, Moshe Goan, had a nephew born with a rare disease, he realized the need for a community of like-minded people. It was then that he started sharing his emotional journey and Yoocan was born. Daily people with rare conditions share their journey with others. Sometimes just hearing someone else’s story gives us hope, ideas, and tips for our own lives. A few months ago, Yoocan reached out to me and asked me to share my story with their community. You can read my story here. 
Since discovering my condition, I have also discovered so many wonderful people that I would not have met otherwise. If you are just now discovering the limb difference community, then I suggest you start by visiting their websites. They have tons of valuable information and connections to a community of like-minded people. 

Love and blessings, 


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