Shay Emma Hammer (‘Shay-Shay’) was disabled in many ways yet managed to touch so many who knew her. During her short 15 years of life, she bravely fought a daily battle with an unknown form of epilepsy.

Now, because of Shay, families around the world with a child that is affected by an SCN8A- related disorder are connected to each other. While she was alive Shay inspired her family and caregivers, and because of her, families, clinicians, and researchers now know so much more about this devastating brain disease.

Shay began her fight with epilepsy when she had her first seizure at six months of age. Her parents knew something wasn’t right when they noticed that her eyelids flickered and her hands trembled many times a day. She was given an EEG to measure the electrical activity in her brain and was diagnosed with infant- onset epilepsy. Though Shay finally had a general diagnosis, her specific symptoms and development were not typical to any existing or known forms of epilepsy. The cause of it all was still a mystery.

Dr Hammer's Research

Shay’s father, Dr. Michael Hammer, decided to take things into his own hands and try to find the cause of his daughter’s epilepsy. At the time, Dr. Hammer was the Director of the University of Arizonas Genetics Core and a researcher studying human genomic variation for the purpose of understanding human origins and adaptation. After receiving approval from the University, Hammer and his team began their work and sequenced the entire genome (genetic material) of Shay, her brother, her mother and Hammer himself. Shortly, after beginning this family genome project, Shay Emma Hammer passed away suddenly in her sleep. She was 15 years old.

Watch the Video

Video courtesy of Arizona Public Media Production: Writer/Producer: Gisela Telis, Videographers: Andrew Brown, Bob Lindberg, Editor: Steve Bayless

International SCN8A Awareness Day

We celebrate International SCN8A Awareness Day on February 9th, Shay Hammer’s birthday.

Help us further Shay’s legacy by supporting all of the people around the world who are fighting their battles as she did. By giving a gift to SEHRF, you make it possible for us to continue researching better treatment therapies for patients and, ultimately, finding a cure for epilepsy and other childhood disorders.

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