Reflections from NGLY1 parents on their son’s 6th birthday


By Eileen and Carl Estenik

In so many ways, Ben is a textbook, mischievous, six-year-old little boy. He has tons of energy for playing, is loud and finds himself absolutely hilarious. He literally waits until the millisecond we aren’t looking, and chucks an entirely full cup of water outside of the bathtub and laughs until he almost hyperventilates!  He doesn’t say a word yet, but can get almost anybody to understand what he wants. When he stops in the store and leans forward in his walker it means he wants to race — yes, through the store, his walker swerving through people. When we sit on the bus bench and watch traffic go by, he almost punches people out with his wildly swinging arms because he is so excited about the cars. One of his best days was when we talked the crew at a rally race into letting us sit at the start line for all the rally cars!

Ben almost has never had a bad day, unless he’s home from school. He lives for the school bus and his school activities!  He is such a good boy for everybody on the planet except mom and dad. He takes part in all activities at school happily with all of his therapists.

Ben can’t walk on his own or speak yet, and lacks the pincher grasp on his hands to even play with his toys properly.  He’s an absolute magician on an iPad, however… neither Ben nor any of us in the family have ever let his challenges slow him down from trying to have a normal life and fun like a little kid should. He has a new tricycle compliments of his therapists from Germany, and is actually an accomplished little swimmer who can swim across the entire shallow part of the pool (with a lot of floaties since he’s almost 70 pounds!).

At six years old, Benji is already a survivor of seizures, cancer, and a liver transplant, not to mention a mean fight with Cryptosporidium and his ongoing fight with NGLY1 symptoms daily.

His brain is so capable, bright and resilient. If it’s any consolation to other parents, there’s a whole lot going on inside those little brains, and they understand, process and pick-up on everything we do! Ben is a busy little fellow, and our goal is to have him find a way he can contribute to the community in the future and hope for a fulfilling life as normal as possible as he gets older!

Probably the coolest thing for us is how much joy he brings other people with his happiness. We always joke that the scariest, scruffiest-looking biker guy in Walmart will smile and giggle about Ben running through the store and yelling about things. He really breaks down people‘s walls…

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