Jacob’s Superhero Story

Jacob’s Superhero Story

Jacob is a SLC13A5 Superhero. Here are a few fun facts Jacob’s mom shared with us!

  • Age: 7
  • Hometown: New York City, but born on Long Island
  • Superpower: sweetie pie with a contagious smile
  • Favorite places to visit: Central Park Zoo to see the performing seals and to visit the dinosaurs at the Museum of Natural History
  • Favorite Transportation: NYC subway (pre-pandemic, of course)
  • What he loves most: his two little sisters, books, music, eating chocolate pudding, and being outdoors

A Love Letter from Jacob’s Family

Jacob’s Medical Journey

We only learned of Jacob’s diagnosis in March 2020. Jacob has been having seizures since day zero of life. His seizures are generally controlled by the seizure medication he takes now, Depakote. It took years to get to this point with his seizures, which meant countless hospital visits. He has been through several medications, some that even increased the frequency of his seizures, which undoubtedly set him back physically.

Jacob used to be able to hold and transfer objects, which he no longer can do. With the help of daily Physical Therapy, OT, and speech and feeding therapy, we are trying to help him be as independent as he can be. Jacob does not walk or talk. He is medically fragile, like all TESS Superheroes. He is at risk of aspiration and feeds on purees and thickened liquids. He requires extra care to maintain the health of his lungs, which have already suffered some damage and scarring in his mere 7 years of life.

Aside from the seizures, Jacob was also born with the premature fusion of his front suture, which is called metopic craniosynostosis. At 9 months of age, he required a corrective surgery for this that would reshape his skull.

Through all of the curveballs and hardships that life has thrown at him, he still manages to keep that smile on his face. He is truly our real life superhero in every way!

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