The 23-year-old noticed a slight tremor in his big toe. The symptoms worsened and after three trips to the Anne Arundel Medical Center emergency room, he was admitted to The Johns Hopkins Hospital.
At Johns Hopkins, he received blood work, IV after IV in multiple veins, CT scans, a full body MRI and a spinal tap. He was diagnosed with Guillain-Barre Syndrome, a rare autoimmune disease that causes symptoms ranging from muscle weakness and fatigue to respiratory issues and paralysis.
The disease was recently in the news because Travis Frederick, an offensive lineman for the NFL’s Dallas Cowboys, tweeted Wednesday that he was diagnosed with the disease.
Tempestilli has been grappling with the worst-case scenario that this disease can present. This summer has been a roller coaster of improvements and setbacks.
At one point Tempestilli’s respiratory distress was so acute that he was on a ventilator and paralyzed. He was in acute pain. His mother, Mary Tempestilli, described it as “unfathomable” to watch her son suffer through what he described as the feeling that his extremities were either “in a trash compactor or on fire.”
After an initial improvement and several rounds of IV infusions in May, Tempestilli left the hospital for rehab. However, this was a short improvement. His symptoms took a turn for the worse, and he was readmitted to the hospital.
The seriousness of his condition and that his rehab will take months was hard for an active young man to accept.
But he finally saw some steady improvement. The syndrome is believed to be a rare side effect of a drug he was taking for Crohn’s disease. The symptoms of GB surfaced after a treatment with the drug.
The drug has a “half-life” of 100 days, and like radioactive materials, it slowly decreases by halves over a period. Mary Tempestilli said she feels it is no coincidence that right around the 100-day mark, her son started showing dramatic improvement.
In early August, he was able to post on Facebook, typing with one finger, “My diagnosis has crossed over from Guillain-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.”
He is on a powerful cocktail of steroids and pain management to combat excruciating pain. On Aug. 8, he was able to hold and drink from a cup. On Aug. 11, he started to use a wheelchair. On Aug. 17, he took his first steps and was able to hug his mom for the first time since the onset of his symptoms.
As of now, he has progressed to taking his first steps, and has been transferred to the Johns Hopkins Bayview Medical Center. At this time, it is undetermined when he will be able to go home.
He and his family remain positive and retain their sense of humor, his sister Emily Tempestilli referring to his room at Bayview as the “RV” and the whole process as "The Tempestillis' Not So Excellent Baltimore Adventure." Joey’s father, Mark Tempestilli, has not slept at home since his son was admitted to the hospital and has spent every night with him.
In addition to the physical, emotional and psychological toll, there is the financial one. Although the family has insurance, and a GoFundMe has raised almost $14,000, the expenses continue to mount. For example, the IV transfusions of immunoglobin he received initially cost $8,000 per bag. He received three rounds of five bags. That is just a small part of the expense picture.
Two friends of the family, Taylor Burnett and Jessica Smith, have organized a fundraiser. It will be held at Donnelly’s Dockside, the former Deep Creek Restaurant, on Sept. 15 from 3 to 7 p.m.
As of now, Tempestilli and his family are planning on attending. There will be an hors d'oeuvre buffet, provided by the restaurant, featuring bruschetta, meatballs, flatbread, crab dip, and hummus.
There will also be a silent auction with items donated by community businesses and individuals. Some of the items: Two Healing Hands Therapy gift cards, four rounds of Golf from Bay Hills Golf Club, Ravens tickets, Paws and Possibilities gift basket and $247 toward dog training, canvas photo prints from Jack Anderson, a gift certificate from Motor Vehicle Academy and more.
Maggiano’s Restaurant in Annapolis, where Tempestilli worked before his illness, is offering a $100 wine dinner gift certificate, a kids’ cooking class, family-style dinner gift certificate for four, several dining gift certificates, and 100 gift bags for attendees.
Port Tack Liquor will be contributing wines for a wine tasting and raffle. Cost will be $20 in advance and $25 at the door. The ticket site will be posted next week, but interested parties can email fightGBforjoey@gmail.com for more information or to arrange a donation.
Tempestilli’s mailing address is John R Burton Pavilion, Rehabilitation Unit, Room 144, 5505 Hopkins Bayview Circle, Baltimore, MD 21224. The family said it is extremely grateful for the outpouring of love and support from the community.