Elijah is a brave, intelligent, and loving almost six-year-old from Santa Fe, New Mexico, where he lives with his parents, Marissa and Stevan. Elijah loves learning, the ocean, and nature documentaries. This month’s ‘Courageously into the Unknown’ is inspired by Elijah’s story.
Walking into the Gonzales/Rodriguez’s home, you’re met with warm smiles and a welcoming atmosphere. Lights are strung on the ceilings and a shelf sits against the wall filled with books about the ocean, space, nature, chemistry and everything in between. You are also sure to find some encyclopedias.
These all belong to a soon-to-be six-year-old named Elijah who lives in Santa Fe, New Mexico, with his parents, Marissa and Stevan.
Marissa and Stevan welcomed Elijah into the world on May 11th, 2016. A typical pregnancy turned into a traumatic birth after Elijah was born not breathing and had to be resuscitated. Afterwards, doctors weren’t alarmed and for the next eight months nothing seemed out of the ordinary. Then a few days after Christmas, Elijah had his first seizure.
The family took Elijah to his doctor’s office in Santa Fe where he was thought to have muscle spasms. Marissa shares,
“I had a gut feeling that wasn’t right, so we drove an hour and took him to the hospital in Albuquerque where he was diagnosed with Infantile Spasms. Doctors originally started him on steroids but were baffled once Elijah’s seizures started to drastically change and evolve. They thought it was a misdiagnosis, so they took him off the steroids and referred us out of state. He proved to be too complex of a case for them.”
In February 2017, Elijah had his first neurology appointment in Denver, Colorado where they confirmed Elijah did in fact have Infantile Spasms. Marissa recalls, “When he was first diagnosed it was a shock for us because we were being thrown into a whole new world, but when we got to Denver, it solidified that this is really our life now.”
Once March came around, things started to go downhill. Elijah’s seizures were taking a toll on his brain and he ended up in the hospital for aspiration pneumonia. His pneumonia was so severe that he had to be life-flighted back to Denver. Elijah was in the hospital for three weeks. It was during that time in Denver that Elijah’s team decided it was time for a g-tube. The family was able to go home in April with a ng-tube and then returned back to Denver for the g-tube surgery.
Elijah had just turned one-year-old.
While the g-tube has helped Elijah with his feeding and getting nutrients, the family still seeks answers for how to ease the severity of Elijah’s seizures.
Along with being on the ketogenic diet, Elijah had surgery for a Vagus Nerve Stimulator in October 2020. “Unfortunately we haven’t noticed a difference yet. His seizures are very hard to manage and treat,” Marissa shares.
“With the seizures, he went from being a really smiley, happy boy to a boy who rarely smiles. He was starting to babble, talk, and eat by mouth just like a typical child. The seizures have taken so much away from him, so when he does smile or vocalize, it is the most amazing thing because we rarely get to see that anymore. We are really just so grateful for him and proud of him for how far he has come.”
On top of the Infantile Spasms, Elijah has also been diagnosed with Cortical Vision Impairment, Developmental Delay, Restrictive Lung Disease, Lennox-Gaustaut syndrome, two types of movement disorders, Dystonia and Chorea Dyskinesia, and most recently, a rare genetic mutation (CACNA1E).
“No matter how many times it happens, getting a new diagnosis is always difficult. We’re still trying to process it. He is considered terminally ill. We try to make the best of every day and live in the moment with him because we don’t know when it’s going to be his last. Everyday, we show him how much we love him. He really is our biggest blessing,” Marissa shares.
Elijah is turning six with us this month and is wrapping up kindergarten. He goes to school twice a week for an hour, but has more fun learning with his parents and nurses. He is also involved in weekly therapy services such as PT, OT, Speech, and Vision. As you could probably guess, Elijah loves books about science and the ocean. He loves watching nature documentaries and visiting museums. He is a very curious and intelligent boy along with being incredibly brave and loving.
Time to get loud shouters!
Throughout the month of May we will be shouting loud for Elijah!
So click here now where every purchase in May will be used to help the family build incredible memories through a bucket list trip with Elijah.
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