Jackson’s Story

Site created on October 2, 2018


During the last week of September Jackson came home with a persistent cough Monday the 24th. Mom took him to the pediatrician and was sent to Children's South for a chest X-ray as he had been wheezing Tuesday morning. We started nebulizer treatments at home and daycare the next few days. By Thursday, September 27 daycare called and said he was running a low grade fever of 100.8 and to come pick him up. Over the next 3 hours Jackson had been vomiting but then was able to scarf down a bowl of mac n cheese later in the evening. Friday, September 28 Jackson got sick once more and would fall with his first couple steps. We thought he just wanted to be carried and soon realized something was wrong. We made him another appointment to see his pediatrician that day and they sent us to Children's Hospital assuming it was Transient Synovitis (hip inflammation brought on by an upper respiratory infection) affecting his left leg. On Saturday, September 29 he began losing the use of his right leg. Most devastatingly, by Sunday, September 30 he could only sit up with assistance. After many conversations with the pediatrician and going to the ER once during this time, he went back to UPMC Children's Hospital of Pittsburgh and was admitted via the ER the morning of Sunday, September 30, leaning towards Guillian-Barre Syndrome because of the ascending nature of peripheral weakness.

To date there have been several tests, including a lumbar puncture and MRI. Once we had the MRI completed Sunday we learned there were 2 other cases showing the same symptoms with similar imaging that had been admitted the night before. What are the chances of that? These doctors are now thinking this was caused by a virus that initiates as a common cold with possible flu-like symptoms. The particular strain they tested for was D-68 came back negative twice. However they still believe the virus is in the same enterovirus family that affects the central nervous system and presents with polio-like symptoms and calling it AFM or Acute Flaccid Myelitis. The odds of being infected with something like this are quite slim. Because there have been so few cases over the last several years the CDC is involved. Jackson's blood samples, cultures, etc. were sent out Monday, October 1st to the CDC to hone in on what caused this. Jackson has been given IVIG antibodies and Prozac to hopefully stop the progression of this virus, and ultimately treating Jackson with supportive care, breathing and feeding tubes along with lots of meds to help keep him comfy. Jackson's team of doctors and nursing staff have been wonderful. We know Jackson is in the best hands.

We appreciate the outpour of support and prayers from our family and friends through this difficult time. Everyone has truly been amazing from helping us care for Charlotte and our pets at home to providing us meals, gifts cards, visiting, and mowing our lawn! We thank you from the bottom of our hearts. We are truly blessed.


 Please check back regularly for updates on Jackson's progress.



There are two GoFundMe pages:
https://www.gofundme.com/jackson-beck039s-fight
https://www.gofundme.com/please-help-jackon-beck

Newest Update

Journal entry by Nicole Beck

I apologize that it's been a while since we last posted.  Jackson has been very healthy throughout the pandemic and he's gotten back into a pretty regular routine the last few months.  He has therapy 3 days a week and attends his daycare, Child's Way, 3 days a week.  He has been driving his chair like crazy and even had to get all new wheels about a month ago from all the miles he's putting in!

Jackson set a new record of 18 minutes and 33 seconds off of his vent last night!  We're so proud of him!  The biggest change I would say since our last post is that there is definitely something going in his left lung now!  It's not as significant as the right side, but it's movement that wasn't there a couple of months ago.  His surgery was in September 2019 and the Doctor said it would take 12-24 months to potentially see results, so we're excited and hopeful for his lungs to continue to get stronger!  We know the potential of getting him off the vent will be a marathon, not a track meet, but this new development is exciting!

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