Just Keep Swimming: Reflecting On My Child's NMO Journey

As a parent, I always had thoughts and dreams for my children. Like most other parents, I wondered when my babies would sit up, crawl and walk. I thought about what the future of my family would be and what my kids would be like as they grew. I thought about all the things my kids liked to do and looked forward to watching them in after school activities and living life to the fullest.

Would I watch them become a doctor, a teacher, a video game creator? One thing I never considered is how quickly those thoughts and dreams could change and along the way, change our family forever.

I never gave rare disease much of a thought until I had to.

Arriving at his diagnosis

Everything changed one morning when we realized our little prank pulling boy could not see. His world and our world plunged into darkness. It took four months of hospitalizations, tests, wrong diagnoses, numerous doctors and finally travel to a different state to arrive at the actual diagnosis.

Collin had neuromyelitis optica (NMO). Words I had never heard and certainly did not understand. I would soon learn my family would never be the same.

Fighting fear as a parent

In those first days, there was so much fear, and I knew I could never allow my kids to see the fear within me. I threw myself into reading every published paper I could get my hands on, which was not much then. There was not much to be found online about NMO and much of what was found was extremely scary.

Collin’s entire body suffered, and he had lost his vision, but he was not the only one who couldn’t see. My darkness was not from physical vision loss, it was from the loss of my ability to see all those dreams for my son, to see him growing up and doing things all the other kids could do.

Hardly any options

My family suddenly wondered if there would be a future. This was a time before any NMO foundation existed, before clinical trials and studies, before any FDA-approved medications, before all the patient programs available now. There were only off-label medications for NMO and in the pediatric world, hardly any options were available.

Collin fought hard and most of the time, with a smile on his face. To say it was difficult as a mom to watch him decline and lose the abilities he once had would be an understatement. However, he always encouraged me and others around him.

Just keep swimming

One of his favorite movies was Finding Nemo. I will never forget the day we were at the doctor’s office and didn’t receive the best news. He knew I was upset and looked me right in the eyes, took my hand and said, “Don’t worry, mommy! I’m going to just keep swimming!”

This became something he would repeat to everyone when they were down, as Dory said in Finding Nemo, “Just keep swimming!”

This became his mantra and one my family has continued since Collin’s death at 9 years old (four months shy of those double digits he wanted so badly).

The world of NMO

This boy is the reason I am still in the NMO community today. I want to continue to give back to the community that gave so much to me and my family during our journey. I want to be a help to everyone, and I am honored to serve.

The world of NMO has changed dramatically since Collin was here. There are now FOUR approved therapies and a large number of clinical trials and studies. There are many patient programs and foundations.

We have huge amounts of hope, and the future looks very bright. Of course, some days are hard for all of us as caregivers and as patients. In those hard moments, I encourage you not to give up, “just keep swimming”! If you’re treading water, you’re still swimming!

“Just keep swimming!”