According to a story from Newswise, it was more than three years ago that Maxford Brown, 16, awoke one morning feeling out of sorts. Maxford, who lives with Down syndrome, tried to rest; but next time his mother Tracy tried to wake him, he had almost completely lost his ability to move. A week later, Maxford would be diagnosed with acute flaccid myelitis, a poorly known rare disease that impacts young people.

“I remember asking our doctor if we should make an appointment. That’s when they told me we needed to get Maxford to Seattle Children’s Emergency Department right away.” – Tracy Brown

About Acute Flaccid Myelitis

Acute flaccid myelitis is a condition that has only recently become known to science, and there is still a lot about it that remains unknown. This neurological disease can cause sudden symptoms, the most distinct of which is localized paralysis or weakness in the limbs. Scientists believe that this disease is most likely caused by infection of enterovirus 68. This virus is a close relative of poliovirus, which is the cause of polio and further suggests similarities between these illnesses. Symptoms of acute flaccid myelitis include acute limb paralysis, pain in the neck, limbs, or back, gray matter lesions (on MRI), difficulty breathing, and increased white blood cell count (suggesting inflammation or infection). There are currently no known treatments for acute flaccid myelitis; immune system altering drugs as well as other medications and procedures have been attempted, but none have seemed to have any effect. To learn more about acute flaccid myelitis, click here.

Maxford’s Story

As the disease entered its most severe stage, Maxford had to spend three weeks in intensive care at the hospital. He began a rehabilitation program there and before long he was discharged. Unfortunately, his life was far from back to normal, and initially he was relegated to using a wheelchair. 

The next year, the Brown family focused on his physical therapy, and Maxford can now walk using a brace. Nevertheless, he has not made a complete recovery, and still isn’t able to fully use his left leg and hand.

Tracy says that the family received excellent care at the Seattle Children’s Hospital and she has been amazed by Maxford’s continuous progress.

“I’m always blown away when he is able to do something new. It’s the positivity and joy he brings to it all that has helped me find the hope again.”

The teen continues to receive care at the Seattle Children’s Brachial Plexus Clinic.