Help Joe Beat Gullian-Barré Syndrome

$16,424 of $30,000 goal

Raised by 144 people in 6 months
Created May 8, 2018
Team Joey
on behalf of Emily Tempestilli
As of yesterday, May 7th, 2018, the Tempestilli family is grappling with a new found diagnosis for their sweet Joey-- Gullian-Barré syndrome. GB is a very rare neurological condition that has essential left him almost completely immobile. Gullian-Barre recovery and rehabilitation is a very, very long road that could take years. In true Joey spirit, he remains positive, but we know he is scared.

He has lost all feeling in his feet and hands and is essentially immobile. Joey has already been battling another tough and painful disease for years- Crohn’s Disease. After his Humira transfusion on April 28th, symptoms of Gullian-Barre (a suspected Humira side effect) started to slowly surface. After 3 trips to the AAMC ER, he is now at John’s Hopkins and has received bloodwork, IV after IV in multiple veins, CT scans, full body MRI and a spinal tap. They now have the diagnosis and Joey is surrounded by a fantastic team of neurologists. Much more inpatient time is expected to be several weeks and perhaps months. Outpatient rehabilitation is a slow, grueling process as well, and it is expected to take a year or longer before Joey can drive or go back to work. 

The Tempestilli family has already been through so much. Now, beyond feeling grief and worry, they are faced with the fact that out of pocket expenses could amount to more than $300,000 in just a few months. Let’s all join together to support our dear friends and be there for Joey as he endures the road to recovery.
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Joey leaving the Neuro floor at Hopkins. He is now at Johns Hopkins Bayview Campus, John Burton Pavilion, Rehab Unit
Room 144
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Joey being able to hug his mom for the first time in over 100 days!
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From Joey, August 5th, 2018:
It's now exactly 100 days since onset of symptoms.
My diagnosis has crossed over from Guillan barre syndrome to Chronic Inflammatory Demyelinating Polyneuropathy, or CIDP.
This is because of the length of time I've deteriorated and my regression in July.
To combat this new diagnosis, doctors ordered 5 days of high dose (1000mg) methylprednisone, a powerful steroid.
My body responded to the steroids, so I will now get weekly infusions until further notice.
I've regained some strength and movement in my arms and hands, but for perspective I'm typing this with one finger and it's almost impossible to not make typos.
Still can't walk, and have virtually no movement below the knees, save for slight, unseeable twitches in my calves.
As for the pain it's pretty well managed now with a combination of Lyrica, Lamictal, and OxyContin, with the occasional need for oxycodone. Just 2 weeks ago though my feet burned so bad that IV morphine, fentanyl, and Dilaudid provided little relief. I was living 4 hours at a time, waiting for my next shot of Dilaudid for 20 minutes of relief. I finally got relief once a Ketamine drip was reintroduced.
I'll be moving to Hopkins Bayview inpatient rehab center where I'll hopefully improve even more.
All your love and prayers mean the world to me, thank you anyone who have kept me in their thoughts.
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Posted by Taylor Marie
3 months ago ago
Check out this video update.
Joey’s first steps since May!!!!
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$16,424 of $30,000 goal

Raised by 144 people in 6 months
Created May 8, 2018
Team Joey
on behalf of Emily Tempestilli
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