Patient Stories

“Volunteers from the GBS|CIDP Foundation, visited my friend Morgan in the hospital. I know that made all the difference in her recovery. She was very motivated and in very good spirits after the visit! We are so grateful!” – Virginia Vassalotti

We are happy to introduce, friend and advocate, Virginia Vassolotti, and GBS patient Morgan Smith. Virginia reached out to us for support and information after Morgan was admitted to the hospital with a GBS diagnosis. “I went online and started to search and I came across the Foundation rather quickly. And just a phone call later I was speaking with the Founder, Estelle Benson! She was amazing,” said Virginia.

Not only was Virginia relieved to find an abundant library of online resources, and a knowledgeable, compassionate ear on the other end of the phone (the founder no less!), but within days a hospital visit was scheduled for Morgan from a former patient and local GBS|CIDP volunteer. Here’s what Virginia and Morgan had to say:

Q. When was Morgan admitted, and how long until she was diagnosed?

A. Morgan was admitted on June 11, 2019 to the NICU at Jefferson University Hospital. She started having symptoms the previous week (June 4) right before she left for vacation to Switzerland with her mom. While in Switzerland her symptoms got worse and she went to the ER there where they suspected she had Guillain-Barre. Her younger sister, Shelby, a med student also suspected GBS. So Morgan and her mom flew home that Monday, June 10-Tuesday, June 11 then immediately was rushed to the hospital. Luckily, they diagnosed her within a week; I’ve heard stories where it’s taken a lot longer to confirm a diagnosis.

Q. How did you find out about the GBS|CIDP Foundation?

Since GBS is so rare, and I had never heard of it, I decided to do some research online when I quickly stumbled upon the GBS|CIDP Foundation. The Foundation has been a great resource through Morgan’s diagnosis and recovery. The stories of other survivors gave Morgan, her family, and friends hope, knowing she would get better.

Q. Who visited from the Foundation?

A. Lynn and her husband, Will, visited Morgan on Sunday, July 14 while she was still in the NICU. This marked over a month of being in the hospital, a couple of days after Morgan had a tracheostomy and gastronomy, and when Morgan was really down.

Q. Did the visit help in any way?

A. I believe having a former patient visit Morgan was the encouragement she needed. Within four days, Morgan was weaned off the ventilator and transferred to a rehab unit. Since then she’s made constant improvements and is in better spirits. Definitely more motivated!

Q. We understand Eli Manning also played a role in supporting Morgan, can you tell us about that?

A. Our friend, Rhett Perry, contacted the Giants organization and every Giants player that has an Instagram to tell Morgan’s story fighting GBS at such a young age. The Giants organization worked with Eli Manning to send her a video, as well as a gift box with Giants merchandise. In addition, Rhett also got a response from Tenny Adewusi, a player on the Giants practice squad who got a video with him and Saquon Barkley.

For more information on volunteer services, or to learn best practices for connecting with patients and/or hospital visits, please contact Kelly McCoy, kelly.mccoy@gbs-cidp.org. You can learn more about Morgan’s journey to recovery here: https://www.gofundme.com/f/morgans-journey-to-recovery.*

*GBS|CIDP Foundation International does not support fundraising activities for individual patients.