Tessa’s Superhero Story

Tessa’s Superhero Story

Tessa is a SLC13A5 Superhero. Here are a few fun facts:

  • Age: 16 years old
  • Hometown: Northern California, USA
  • If it were up to Tessa, she would wear purple clothes from head to toe every day of the year!
  • Practically lives off grilled cheese sandwiches…yum!
  • Constantly planning the next party; you will often find her with a bag of balloons in her hand.
  • The best way to get Tessa to disconnect from her iPad is with an impromptu dance party!

Tessa’s Medical Journey

Tessa spent a good portion of her early childhood in hospital beds, hooked up to EEG machines to monitor for seizures, with an IV in her arm to administer emergency seizure medications.  She spent her first and second Christmases in the hospital.  Her first birthday included an ambulance ride because of a seizure that lasted an hour, and her 3rd birthday party had to be canceled because of an unplanned hospital stay.  She spent her 4th Halloween (and her baby sister’s 1st) in a hospital bed not allowed to eat candy.  We had to miss her uncle’s wedding because it was finally our turn to try an experimental seizure treatment (that didn’t end up working).  The list of major events and milestones that Tessa missed out on is long.

But through it all, Tessa smiles.  This is her superpower:  No matter what SLC13A5 Epilepsy throws at her, she maintains her infectious smile, her unparalleled resilience and her unending determination.

Would you like to make a donation in honor of Tessa?


To learn more about the Nye Family’s journey, check out the links below:

Medical Momentum: The TESS Research Foundation helps families worldwide fight a rare disorder (December 2018)

Different – A Memoir by Lily About Her Sister, Tessa (July 19, 2018)

Tessa’s mystery condition gets a diagnosis (February 28, 2018)

Rare Disease Diagnosis Creates a Mission for Local Mom (February 28, 2018)

Facing the unthinkable: Nye family helped scientists discover a new disease; now they’re on a mission to find a treatment (September 13, 2017)

Breaking the code: Inside the search for a diagnosis (Fall 2016)

The Nye Family’s Experience with Citrate Transporter Disorders and SLC13A5 (July 25, 2014)

Tessa’s Pictures