Katy’s NMO Story – The Making of a Warrior

This is a story of how a warrior is made. I have been gifted with the job of being this warrior’s mother and I am proud to share her story.

This is the story of a smart, beautiful, strong, athletic, healthy 12 year-old who suddenly was thrown into battle – a battle with fear, unknowns, rarity, and what seemed to be all odds stacked against her…

On a hot and carefree Tuesday in July 2016, Katy (then 12 and a 1/2), spent the day at the beach with friends. When we got home, she said to me, “Mom, my leg feels funny. I can’t feel cold.” Not being an alarmist, I said, “well silly, you’re putting that ice pack on your leg and freezing it. Stop doing that!” We went on with our evening.

On Wednesday, I did what I always do in late summer – I went to work for the entire day and evening to set up my classroom as school was starting the following week. I didn’t see Katy at all that day and didn’t think about her legs not feeling cold the day before.

On Thursday, we got up to go and check out the tortoise that she was getting. In the parking lot of the reptile store, she stumbled. Still not thinking anything, I hurried her along and we picked out her new pet, Sheldon. We told them we’d come back to get him once we had his enclosure set up. Katy and I then went to a store across town where she continued to stumble and flip off her flip flop. Again, I hurried her along and told her to stop doing that. She said, “but mom, my foot feels dead.” I thought for a moment and asked her if it was the same leg that felt weird on Tuesday and she said, “no, it’s the other leg.”

I immediately thought of my dear friend who after odd symptoms, was diagnosed with ALS. She once told me that any time symptoms cross the midline, it’s likely something neurological. A little panic went through me and I sent Katy off to look at something just so I could see if her stumbling continued. It did. I immediately called her pediatrician whose office happened to be right next door. They wanted to see her in an hour. We did a little more shopping as we waited for her appointment time.

At the office, her doctor knew something was up; her gait was off and she had significant weakness on the right side. He did a few strength and sensation tests and said, “I think it’s something viral in her nervous system. Take her home, have her do what she normally does and call me in 24 hours if it worsens. It is worsens, I’ll probably send her to the hospital in the morning.” So off we went, me with a feeling in my gut that this was something BAD. 

We were home all night and I watched her like a hawk. Her gait continued to be off but she managed the house just fine. At about 10:15 pm, Katy face planted right in the middle of the living room. She tripped on her foot. Right then I knew, I knew something was horribly wrong! I sent her to bed and I texted a few of my physical therapy friends who all suspected it was neurological based on the symptoms I described. “Get her in as soon as you can in the am!”

That night at about 2:00 am, Katy woke up with bad back pain. I gave her Motrin and rubbed her back but nothing seemed to help. I did not connect her leg issues and back pain together. She finally fell asleep and was able to sleep through the night.

On Friday, she woke up with what is called “foot drop”. I immediately called her doctor. He was setting up an x-ray for her back and contacting a neurologist. Katy grabbed a bag of fun stuff to do, we jumped in the car, and headed to the office for the x-ray. On the way, her doctor called and said, “I can’t get her into a neurologist today. Take her to Children’s Hospital in Troy. I’ve already called and they’re waiting for her.”

At the hospital, they repeated the texts the doctor did the day before and did the back x-ray. The emergency doctor said, “her spine is crooked; perhaps it’s scoliosis.” I was a little shocked but thought, “well that explains it I guess.” She continued, “we are transferring her to downtown Detroit. Troy is not capable of diagnosing and she needs to be seen ASAP.” I was prepared to drive her to Detroit but the team at Troy sent her via an ambulance. Katy sat in the back, Snapchat-ing her peeps as I sat in the front in a silent panic.

As soon as we arrived, every neurologist in the hospital was on her, speaking in hushed tones and trying to conceal their looks of concern. They ordered every test known to man. They asked hundreds of questions about injuries, bug bites, family history, and other ailments. Nothing could be connected to the past three days. That day turned into evening. She was in a 2.5 hour MRI, checking everything from her orbits of her eyes to her tailbone. I waited and waited for results. Finally, a midnight doctor came in and said, “she has lesions on her spine. The team will talk to you in the morning.”

That night was the darkest, scariest night of my life. Katy was admitted into a room. I worried and cried all night. To me, lesions could only mean one thing – spinal cancer. At 11:00 am the following morning, a neurologist came in, “Well, we are thinking two things.” In between my sobs, I asked if it was cancer. He replied, “Well, they haven’t ruled that out but, it looks more like MS or NMO.”

What a peculiar feeling to have switched from wishing it wasn’t cancer to hoping for MS. NMO didn’t even register to me.

I know lots of people with MS; they are all healthy and happy adults living a full life! I was, at that moment, so happy to think she had MS. Twisted, I know. He went back to NMO stating, “it’s very similar to MS but different. We will know more as we rule out everything else.” They continued the tests and of course, I Googled NMO. What a mistake that was! The first bit of data I found read, “the average life expectancy is 4-6 years.” WHAT!? He never mentioned that! From that point, my best defense, denial, kicked in. Katy did NOT have NMO. She had MS. Katy had Lyme. Katy had West Nile Disease. Katy has an infection. Katy has a virus. Katy has a spinal injury. Katy could have many things but NOT NMO! After spinal cancer, NMO was the worst thing I could imagine.

I fought with the doctors for the next week, “NO – watch, she will surprise you. She’s going to have some freaky weird thing that will clear up.” They all said, “no, we really think it is NMO.” As soon as infection was ruled out, they began Katy on high dose steroids. Little by little, my strong and athletic girl began to regain movement in her right leg. Everyday, she walked a little better and more of her strength returned. Each day brought more hope and finally with confidence I said,

“Okay, we can do this. She is going to fight. Katy is going to win. NMO has met its match.”

Over the next several weeks, Katy pushed through therapy, continued taking oral steroids, and waited for the appointment with her new neurologist who was assigned to her case. Three weeks after her official diagnosis from the Mayo Clinic, Katy played in a soccer tournament. Just weeks before, I was unsure if my little girl would walk again and here she was, playing defense in the dog days of our Michigan summer. She continued to push herself and by October, her physical recovery was complete. My girl was healed. She was whole again. She battled and she won!

It was also in October, after fighting with the insurance company, that Katy started her preventative medicine. She continues to handle her infusions like a champ. Seldom does she complain. She bounces up afterwards and continues on with her life. This is simply a blip in her screen.

This is THE story of how Katy became the strongest and bravest warrior I know and I am proud to call her my daughter. She takes on the unpredictable beast that is NMO and fights and wins! This disease has truly met its match… for that I have no doubt!

Tami Freeman, mother of Katy and TSF Ambassador for Michigan