10 Nov Aubrey’s Superhero Story
July 13, 2023 Update
It is with an unimaginable heavy heart that we announce the unexpected passing of TESS Superhero Aubrey. In this moment of profound sadness, our hearts ache, and we extend our condolences to her family during this difficult time.
November 10, 2021 – Original Superhero Post
Aubrey is a SLC13A5 Superhero. Here are a few fun facts Aubrey’s parents shared with us!
- Name: Aubrey
- Age: 3
- Homeprovince: Ontario
- Aubrey is a total Daddy’s girl
- She loves music. Her favorite instrument is the piano
- Aubrey likes animals, especially dogs and horses
- Her favorite place to be is Preschool
- Aubrey loves picture books or just books where she can easily turn the pages
Aubrey’s Medical Journey
Shortly after Aubrey was born, we noticed she was having short rhythmic movements and then her body would go limp. After being observed for a few hours in the nursery, Aubrey was transported to the NICU at our local pediatric hospital where she spent the next two weeks. She was discharged on an anti-seizure medication but was only stable for 3 short months.
During Aubrey’s first year of life, she was hospitalized 8 times, failed 6 anti-seizure medications and was having seizures daily. Given the amount of seizures Aubrey was having and no known cause, a genetic test was requested. Her neurologist believed that the Ketogenic Diet was her best option. After an 8 week hospital admission, Aubrey was discharged with the best seizure management that we have seen so far. We were given the diagnosis of SLC13A5 on Aubrey’s first birthday.
Aubrey is the true definition of a superhero. Despite all of the daily challenges, Aubrey smiles through it all. She has been our little warrior since the day she was born. Over the last two years Aubrey has made amazing gains. Prior to the Keto hospital admission Aubrey was meeting her milestones, sitting, standing, rolling, using both hands and starting to babble. After her admission, Aubrey has had to learn all of these things again. Not a day has gone by where Aubrey has not woken up with a smile and gone to bed with a giggle!