My Superhero. My Son.

I could have never imagined it getting any worse than those first hours. There couldn’t be anything worse than your four-year-old getting tortured by a bunch of strangers… Until, I was told he might not live. You can never prepare yourself for that. Ever. Time seemed to stand still in that moment. Then Anthony started to decline and it would become a race against time… The days blended, my body no longer needed food or sleep to keep moving. My mom and I researched everything they threw at as, from Guillain-Barre Syndrome to Lyme’s disease. Test after test, MRI, CAT scan, LP (spinal tap), blood cultures, etc. In the midst of testing, my mom got a call from my sister’s mother-in-law who also works at the pediatrician’s office my children go to. I had texted her when Anthony woke up from his nap and was unable to stand. I let her know everything that had happened.

When she called my mom, she told her about a notice the Pediatrics office had just received from the Center for Disease Control warning physicians to be on the lookout for acute weakness of one or more extremities. Warning that it could be symptoms of a “polio-like” illness affecting children and causing paralysis…. The doctors at St. Chris shrugged it off. They’d been most certain Anthony had meningitis, as did I. He had all the symptoms. The severe headache, light sensitivity, pain, etc. which we discussed could be the possible cause of the weakness due to the swelling of his spinal cord and would resolve once the swelling subsided. But evidence was still needed in order to make a conclusive diagnosis. After hours of imaging and tests… More poking, more needles (Anthony’s I.V. was removed by a nurse accidentally!), test after test… It was now Friday, it had only been three days. My mom stayed with me and neither of us had slept yet. We were now awaiting the final results of the testing. Once back in the room, I was finally able to relax myself and Anthony was starting to settle. It was just me and my son now. Anthony in his hospital bed and me next to him. Soon after, the Neurologist came in with one of her colleagues. The look on her face was immediately unsettling. I was told to sit so I grabbed my notebook and did as she told. Anthony had in fact had Viral Meningitis. His MRI came back showing inflammation of the spinal cord. But what it also showed were lesions on the grey matter of his spinal cord. They had a diagnosis… Acute Flaccid Myelitis.

With this new diagnosis, we immediately transferred Anthony to the Children’s Hospital of Philadelphia (CHOP) with the help of Anthony’s pediatrician at Lower Bucks Pediatrics. I promptly began educating myself as much as I could on my son’s new diagnosis of Acute Flaccid Myelitis. The more I read the more intrigued I became. And no wonder? The suspected virus known as enterovirus D68 is a theoretical factor that is leaving children paralyzed. Some of these children left paralyzed from the neck down, leaving them quadriplegic. What’s most puzzling is the fact that only certain children are affected in such a way. Why it is affecting some children and not all is unknown. The enterovirus D68 is a respiratory virus that affects a substantial number of adults and children worldwide. It is spread like the common cold and more often seen in the fall season. It also presents differently in children than it does in adults. Children can show harsher respiratory symptoms, whereas adults commonly present with mild symptoms or even no symptoms at all. Still unknown is also whether the virus is a direct attack on the spinal cord or post-viral inflammation causing the damage to the nerves leaving these children paralyzed. There is no vaccine and no cure.

Once at CHOP, everything seemed to feel less stressful, it was a much more calming environment and I felt like my voice finally mattered. He started the IVIG (Intravenous Immunoglobulin) treatment in hopes of attenuating the effects of the unconfirmed virus. We were in great hands at CHOP. Even so, Anthony still got worse. We were unable to move him from the curled-up position he was stuck in without him screaming in pain. Physical Therapy came in to help with his ability to move. The Neurology team at CHOP houses some of the only physicians who specialize in Acute Flaccid Myelitis. With expertise in rare neurological disorders and demyelinating diseases of the central nervous system, we were in the best place to get Anthony the help he needs.