Open Your Heart to This Beautiful Gaucher Story

So…I just found out that apparently time travel is not something you can ACTUALLY do. There go all of my carefully-laid plans for what I want to be when I grow up. Thanks a lot, “science”!

reaction doctor who crying matt smith
My childhood is dead. Source: www.giphy.com

Fine, I get it, time travel isn’t possible in the real world. In the world of storytelling, though, time travel has always been possible. Stories can transport us to any time, any place to witness moments big and small. A story told well can do more than relate a series of events: It can take us deep into the hearts and minds of the people who experienced them.

Lucky for us that Emma Rooney understands this so well.

Emma was diagnosed with Gaucher disease in 1983, when she was only three years old.

Emma’s story stands right on the dividing line of the world before and after enzyme replacement therapy (she had her first ERT infusion at age 13).

In an imaginative YouTube video, Emma narrates her story over a backdrop of family photographs and artwork created by her sister Megan, seamlessly transporting us to a time that seems at once very familiar and utterly alien.

Her insights allow us to feel her family’s fear of the unknown and their struggle to find normalcy in the face of a disease that challenges the very notion of normalcy. And throughout, you can’t help but be inspired by Emma’s resilience and optimism.

Emma here, looking as sunny as those flowers. Source: mynormal.ca

Of course, in the 30 years since Emma’s diagnosis a lot of work has been done to better understand Gaucher disease, and kids diagnosed today have far more treatment options available.

Nonetheless, parents and newly diagnosed children alike should check out this video—there’s an almost fairy tale quality to the story, and like any good fairy tale, there’s a “happily ever ending” that holds out hope for a bright future with Gaucher disease. And that never gets old, no matter where or when you live!


Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

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