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This post is to inform and share with you a story single mom who went through having her rainbow baby diagnosed with Acute Flaccid Myelitis and how she sought immediate treatment that was crucial for the wellbeing of her daughter Zi Joy. This post in no way is to provide any type of medical advice.
What is Acute Flaccid Myelitis?
Per MedLine, Acute flaccid myelitis (AFM) is a neurologic disease. It is rare but serious. It affects an area of the spinal cord called gray matter. This can cause the muscles and reflexes in the body to become weak. Because of these symptoms, some people call AFM a “polio-like” illness.
AFM affects mostly children from newborns to 19. And a few adults. It is a common cold virus that attacks the spinal column.
What are the common symptoms associated with AFM?
Most people with AFM will suddenly have
- Arm or leg weakness
- A loss of muscle tone and reflexes
Some people also have other symptoms, including
- Facial drooping/weakness
- Trouble moving the eyes
- Drooping eyelids
- Trouble swallowing
- Slurred speech
Sometimes AFM can weaken the muscles that you need for breathing. This can lead to respiratory failure, which is very serious. If you get respiratory failure, you may need to use a ventilator (breathing machine) to help you breathe.
AFM can progress rapidly over the course of hours or days, leading to permanent paralysis and/or the life-threatening complication of respiratory failure in previously healthy patients, so delays in care can be serious.
What the Center’s for Disease Control and Prevention (CDC) are saying?
The CDC is anticipating another dramatic rise in cases in 2020. The disease has peaked every two years between August and November in the United States since 2014. Enteroviruses, particularly enterovirus-D68 (EV-D68), are likely responsible for these peaks in cases.
CDC released a new CDC Vital Signs report to alert health care providers to a possible outbreak this year. This Vital Signs report reveals a delay in care for some patients in 2018: 35% of patients were not hospitalized until two or more days after limb weakness. AFM can progress rapidly over the course of hours or days, leading to permanent paralysis and/or the life-threatening complication of respiratory failure in previously healthy patients, so delays in care can be serious.
A personal story of a friend of mine who went through it:
Zi’Joy: “Donna my legs don’t work my body hurts”
Me: Zi stop playing
Zi: “my legs don’t work. I want to jump but I can’t
Words no mama ever wants to hear.
Many know that my 2-year-old Daughter Zion’Joy was struck with a fatal spinal column injury called AFM Acute Flaccid Myelitis on January 10, 2020, she was paralyzed from the waist down losing control of all of her bodily function and movement. Zi was able to communicate clearly what was going on with her body. Early that Saturday morning. Like any other child she was running and jumping and then all of a sudden she collapsed to the bed.
I picked her up she collapsed I picked her up again she collapsed back down. I put her on the floor she collapsed and started to cry and pull herself forward with her arms. This began our odyssey and life journey with AFM Acute Flaccid Myelitis. Our journey from the darkness into the light. ZionJoy is literally 1 in 1,000,000 in the world.
The doctors call her a medical miracle a walking miracle. Yesterday a Neurologist leading in the field called her the top 5% in recovery. Zi is my rainbow baby, my joy, my light we fight every day, but because of many like you and your generosity I can share this fight and not have it be such a battle but a blessing.
Mama Donna. (Follow my story here)
None of this is fair and all of this is terrible, but that doesn’t mean we get to ignore it. No more scared children in ICUs. No more Halloweens in rehabs dressed up like FDR. No more first birthday parties in rehab waiting areas or family pictures on the lawn. No more children crying from the pain of sitting up, the fear of not being able to breathe. No more families are torn apart. No more paralyzed kids. You can help make AFM no more. Pass it on, please.