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Real Families: The Rare Disease You've Never Heard Of


A local family and friend of Melissa's has been going through an unimaginable battle with their six-year-old little boy for the past two years. Given the time of year that all of this took place and what they believe are the causes, it was important to the family to share their story in their own words.

 My name is Alex Jones.

On September 4, 2016, I woke up to a nightmare. 

My 4 year old son was unable to move his right leg. My wife and I rushed Little Alex to Hoboken Hospital and from there we transferred to Hackensack Hospital. Over the next two days, Alex lost the mobility in his left leg and within 5 days we transferred to Columbia for IVIG treatments and Plasmapheresis. Alex's spine was being attacked by a virus similar to Polio, we would spend nearly a year in hospitals at his side. 

Acute Flaccid Myelitis is the prognosis. We were fortunate to get him treatment before it went all the way up his spine. Most kids afflicted by the virus are paralyzed from the face down. The chances of getting Acute Flaccid Myelitis are one in a million, but in both 2014 and 2016 there was a spike in the number of children affected by the virus. In September 2016, there were 85 children diagnosed and by the end of 2016, the number was closer to 160. 

The summer of 2016, we barely left the area except for a week long rental on the Jersey Shore.

Alex's first display of the virus was a respiratory event. Alex has never had asthma and we were given a nebulizer treatment and a nebulizer to take home. I don't know if this masked the problem or kept the virus from further attacking his spine, but 3-4 days before he lost mobility, there was this apparent asthma attack. So, please keep this in mind if you notice your child breathing erratically AT ALL this summer.

The most frustrating thing of all is that the doctors and neurologists cannot tell us how or why certain children are affected; only that it has something to do with how hot it got those summers and possibly a link to E. Coli.

As a warning from a parent and friend who never wants to see another family go through this ordeal, I say avoid public or crowded pools especially after 1:00 PM. Stay far away from anyone who professes to have a "summer cold", and dog owners pick up after your dogs! These were among the most popular hypotheses of how this virus may have infected my son. 

Please pray for my son and our family and make yourself aware: Acute Flaccid Myelitis

Thank you for your time in reading this please keep sending your most positive hopes!

**Editor's Note: Alex's sister-in-law started a GoFundMe page that was sent to us by another local mother and business owner. If you are interested in contributing, you can find out more here.


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HEADER PHOTO CREDIT: Danielle Guenther Photography

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