A Rare Collection – Batten Down the Hatches

Once Upon A Gene

A Rare Collection – Batten Down the Hatches

October 13, 2022

A Rare Collection – Batten Down the Hatches


A Rare Collection – Batten Down the Hatches

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. 


My best friend- Kelly Vandewerker

Prior to 2015, I lived a life unaffected by rare disease. When Effie became pregnant, I hosted her baby shower and couldn’t wait for her baby to be born. I had a three year old and one year old at the time and imagined them being best friends, going to summer camp together, and spending summers together on our boat. When Ford was born, we knew something wasn’t quite right and over the months that followed, he was placed on a feeding tube and made regular trips to the ER. When we had our scheduled girls weekends, Effie didn’t want to talk about it- she was angry. As her friend, I didn’t know how to support her and outside of sending meals, I didn’t know what she needed. When Ford got his CTNNB1 diagnosis, it empowered Effie to stand up and fight. She knew what Ford was up against, she found a tribe of people and she found her voice. With that, she was able to share how her friends and family could support her and her family. I found my passion in helping Ford through fundraising, advocating, building programs and helping schools write grants to fund programs. When it comes to rare diseases, we’re all learning and there are a lot of unanswered questions, so support research, support your friends and love on all the amazing rare kiddos. 

Best friend to Parvathy Raman Krishnan- Sri Vidhya

Parvathy and I attended school together in India from kindergarten through 12th grade. We knew each other by name and nothing more and came to the United States at different times. When my husband and I learned Parvathy and her husband lived close to us, we met with them and immediately had a spark between our families- like we knew each other forever. As our friendship grew blissfully, Parvathy’s husband broke the devastating news to us that their oldest child had been diagnosed with a rare disease. My husband and I didn’t know how to respond, whether to ask questions or give their family space. We decided to stay quiet, masking our heavy hearts. I started researching medical terms and gaining understanding so I could talk to my friend. It brought depth to our relationship and it gave us a bigger purpose. I’m always in awe of Parvathy and her husband’s grit and determination to handle things, to inspire the world- spreading the message that nothing is too big to handle, merely by living their life everyday. 





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