Robbie's Battle with ALS: Every Dollar Helps

The past two years have been a hell of a journey for us, and in particular, for Robbie. Multiple doctor visits, tests, hospital stays, and specialists were not able to pinpoint what was going on with random health issues. He was diagnosed with medication-resistant frontal lobe epilepsy but there were also multiple things going on that could not be matched to epilepsy. A recent diagnosis of demyelinating disease pushed us light years closer to a diagnosis. As we look back, it’s all pretty clear now but going through it, we were all in the dark.

We have been referred to Massachusetts General Hospital Sean M. Healey and AMG Center for ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease)
On June 25th of this year we will be at Massachusetts General Hospital for evaluations and testing. It is the belief of his entire care team here (Primary, Neuro, Cardio, Urology, Rheumy, as well as from the in-home care he’s been getting for nursing, speech/swallowing therapy, occupational therapy, and ongoing physical therapy) that Robbie is likely in year 2.5-3 of ALS. He meets all the criteria and over the past year, he has experienced a severe decline including choking, swallowing/eating issues, muscle weakness, loss of muscle mass, facial numbness, breathing issues including random events of cessation of breathing, and more. He is no longer safe being home alone and the caregiving needs have greatly increased. We are thankful for the opportunity to go to MassGen.

This is an incredibly difficult journey and to those who have stuck by us, believing that we would eventually find answers, we thank you. We have started a much-needed GoFundMe account to raise the funds required to make the trip to Boston and be there for up to one week. Things are tough everywhere and every dollar helps. We hope that you will prayerfully consider a donation to help us with this first step of the journey. We love you all and thank you for walking with Robbie.