My name is Veronica and this is my NMO story. I am not a patient but a mother/caregiver of an NMO patient. I have always been in a way, made fun of because I am THAT parent. You know, the one that takes their kids to the doctor for anything and everything. I thank God now that I am THAT parent and as I continue to share my story, you’ll know why I am truly thankful. I will share a glimpse of my son’s life leading up to his diagnosis. I have included dates because I have noticed for other storytellers, it took years for a diagnosis; my son’s diagnosis took two months…
My son Elijah Mayberry has always been my little athlete. He played baseball since the age of 3, basketball at the age of 5 and football came later. I okay-ed him playing football in junior high only because it was flag but then he was convinced to play his junior year of high school and that became my most stressful season ever. I wasn’t meant to be a football mom. Out of all 3 sports, baseball was his life. Elijah talked about playing in college with hopes of one day going professional to play for his beloved Boston Red Sox playing alongside Mookie Betts. I know that is every kid’s dream but Elijah also had a backup plan. Teaching in elementary school would be his second choice.
Elijah graduated in May 2018 and had the best senior year. It was not only great for him who was involved in everything but he made it fun for us, his family. The excitement of every game, the senior nights, homecoming games and especially graduation. I was happy to see that he was living his dream, his plan. He achieved goals as a student athlete even being awarded Male Athlete of the Year while maintaining 3.5+ GPA.
In June 2018, he enrolled in summer school at our local junior college and played baseball in the summer league to prepare him for the upcoming season. This is when his symptoms began. He would wake up asking if anything was crawling on his back. I’d tell him no but he could feel something. As days went on, Elijah would ask me if I could read his English book to him because he kept falling asleep. I thought, “oh no, he may not be able to handle the college life.” I read to him and nudged him as he would doze off. At this point, I figured the content was simply boring him. Elijah didn’t have a driver’s license so his grandma would drive him to and from school. It was during those car rides, that he confided to his grandma that he was waking up with headaches every morning. My mom of course told me and even though I was worried, I told her that it was probably stress since college is different from high school.
Still, I made an appointment for him to see his pediatrician. At the appointment, I mentioned how he seemed a little more tired than usual and a blood test was ordered to check his iron levels. I never received a call back from the doctor so I assumed that maybe I was just being paranoid. Within the weeks that followed, I noticed he was sleeping more. Okay, Elijah is known for taking naps but the naps lasted longer than usual and he would literally fall asleep while eating.
To prep him for college, we made plans to go car shopping on August 4, 2018. He fell asleep at the dealership and I thought to myself that any kid getting a car would definitely not fall asleep. When we left the dealership, I drove him straight to Valley Children’s Hospital. When the hospital understood that he was not drugged, they ordered a CAT Scan, a brain MRI, and was admitted to the ICU. He had inflammation but the mystery was the cause. I remembered that morning on our way to the dealership, he asked if I can make him an appointment to go to the eye doctor because his eyesight seemed “off”. I mentioned that to the team of doctors and sure enough, it was optic neuritis. He was treated with steroids. As far as his brain lesion, negative results came back from the countless blood work and 2 lumbar punctures. This illness was still a mystery. The team concluded that he may be developing MS so he was referred out to UCSF.
On September 25, 2018, we made the 4 hour drive to San Francisco to meet a doctor who specializes in MS. Within 10 minutes of the estimated 2 hour physical evaluation, the doctor stopped and said, “he doesn’t have MS but I think I know what he has.” She had Elijah admitted for a week while they ran more blood tests and another lumbar puncture. On October 18, 2018, just two weeks after Elijah turned 18, he got his diagnosis – Neuromyelitis optica and Anti-NMDA Recepter Encephalitis also known as “brain on fire”…
How has this affected Elijah?
Physically, he gets tired easily. My little boy who was once so active and nonstop has now slowed down. I am still not used to seeing him less active but he is better than where he was during those two months of the unknown. His biggest struggle was letting baseball go. Although he is no longer playing baseball, you can still find him on the field helping coach the Dinuba High School team or playing in an adult slow pitch softball league.
Mentally, Elijah has always been motivated and strong-willed. Maybe it was baseball, his God-given talent that has made him that way. After all, baseball is known to be a mental sport. Having a plan if the ball heads your way, the conditioning at practices, and the coaches that have pushed him to always give 100% helped acquire that strong mindset. That could also be why he was prepared when NMO was hit out to center field. Elijah just needed a game plan and had to keep going.
Elijah has returned to college after taking a semester off. He has been a part-time student during the last two semesters. Even though he is attending college part-time for now, he has said that the amount of time it will take for him to complete his degree will never be written on the degree. He inspires me to see life differently and no matter what, never stop moving forward.
There I was, feeling bad for my son not being able to live life like any other teenage kid. He did lose his original plan and some friends but he quickly adjusted to a new plan and has met some incredible young adults at NMO Patient Day 2019. My son is my inspiration; he has a valid excuse to make up a million excuses but he doesn’t. The enemy may try and destroy his body but he certainly won’t destroy his mind. Elijah’s faith in God is much stronger than the enemy’s efforts.
We are blessed to have family, friends, a community and baseball family that remind Elijah that he will never fight alone. How am I now? I will admit that now I am even more of a helicopter mom to my 18 year-old. Yes, I annoy him but he will always be my baby. At times, life may seem like it is based around Elijah and his needs when it comes to traveling or planning a vacation but his brothers have never complained. I went from being on the Home Run Club boosters, working concession and front gate to thousands of games to becoming an NMO advocate. My son won’t give up and neither will I.
We are #MayberryStrong