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The Mysteries of Undiagnosed Conditions and Genetic Testing with Laura LeBrun Hatcher

August 7, 2018

 

Laura LeBrun Hatcher is a graphic designer, a small business owner, an adjunct professor and the Director of Communications for Little Lobbyists. She is the mother of a sixteen year old daughter, Olivia, and a twelve year old son, Simon. During a routine ultrasound in the latter part of her pregnancy with Simon, she and her husband Brian learned that the baby had hydrocephaly. When Simon was born they also discovered that he had had a stroke in utero whose effects would cascade into multiple problems, including cerebral palsy and epilepsy. Simon has cognitive and physical disabilities but a phenomenal sense of humor. Laura says, "Simon has the best laugh you've ever heard." He is currently obsessed with Sesame Street and wants to be a chef when he grows up.

 

Listen on iTunes

 

In today's podcast, Laura, Jason and Elizabeth discuss the intricacies of genetic testing, the work of The NIH Undiagnosed Diseases Program and how they each grapple with the mysteries of their children's diagnosed and undiagnosed problems. When Simon's motor abilities began to decline, they discovered optic nerve atrophy and neurological hearing loss. That led to genetic testing and the discovery that Simon had a unique genetic mutation that was the cause of all of his issues and possibly even his stroke. 

 

Laura has been advocating for Simon since he was born, but during the past year, as the federal threat to children's well-being increased, she joined forces with other parents of kids with complex medical needs as a part of the Little Lobbyists' leadership team. As the Director of Communications, Laura helps craft and create messages to connect the community, inform families and legislators about the policies and practices that impact kids, and promote the representation of children with complex medical needs and disabilities. 

 

Jason and Laura also spoke at length about what it means to be a caregiver of a child with complex medical needs for many years as well as aging parents. They all agreed that this is a topic -- "the Caregiver Sandwich" -- that deserves its own podcast!

 

When she isn't advocating, creating or teaching, Laura works toward making the world a more beautiful place by volunteering on various board committees that support arts in education and the inclusion and celebration of people with disabilities. She believes that, regardless of health or ability, all people have gifts to share, celebrate and use to make our world more beautiful. 

 

Oh, and she does a lot of yoga, crochets gifts for her friends, bakes impressive cakes and really appreciate a nice manicure! She advocates list-making.

 

 

 

Lightning Round

 

Purchase < $100

 

A necklace fan. "My guy can't tolerate heat very well so this little fan helps him to stay comfortable and helps our family enjoy summer outings."

 

Inspirational Book

 

Small Victories: Spotting Improbable Moments of Grace by Anne LaMott

 

Inspirational Person or Group

 

Little Lobbyists

 

 

 

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