Help Joe Beat Gullian-Barré Syndrome
Donation protected
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.
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.
Organizer and beneficiary
Taylor Marie
Organizer
Arnold, MD
Emily Tempestilli
Beneficiary
