A Rare Collection – Holiday Cheer

Once Upon A Gene

A Rare Collection – Holiday Cheer

December 15, 2022

A Rare Collection – Holiday Cheer


A Rare Collection – Holiday Cheer

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. 


Jessica Johnson

I love holiday cookies, parties, and gift-giving, but my best source of holiday cheer is my son. He is the definition of festive and his excitement is infectious, inspiring feelings of cheer and joy. While he and I spent the day decorating our new Christmas tree, I was reminded of what’s truly important during the holidays– being with my family, seeing my son filled with pure joy and happiness despite his challenges. The holidays can bring about stress, anxiety and sadness for many families. For those families finding themselves in a hard season, remember you’re not alone and it will get better. However small or insignificant, define your own holiday cheer.

Ed Gabler

Growing up, the holidays meant a real tree in the corner of the living room, tied to each wall so the cats wouldn’t knock it over. My dad read ‘Twas the Night Before Christmas to all of us kids and on New Year’s Eve. After my children were born, my wife and I started new traditions. Now as a grandparent, we share traditions with our daughter’s family, but it looks a little different. Our grandson Cole was diagnosed with SYNGAP1 and making holiday cheer has required some adaptations and improvising. Cole’s mom and dad created traditions to include everyone. They focus on the small wins, the smiles and laughs Cole shares when he’s happy or excited. Rare holiday cheer is special. 

Anthony Royal 

As far back as I can remember, the holidays have never been a joyous occasion for me. In South Carolina, the holidays were warm– no fluffy, white snow or kids speeding downhill on sleds. As a kid with un-diagnosed ADHD and anxiety, having more family around meant more people around to be mad at me for something. I was never keen on Santa either. My wife goes all out on decorations with five Christmas trees in the house, lights, holidays signs and swag along the halls. My son also loves the holidays. He has CTNNB1 syndrome with symptoms that make life difficult for him, many of which have only added to my holiday depression in the past years. My son’s excitement for the holidays has helped me to love them again. You could say my heart has grown three sizes since he was born.





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