Amyloidosis Patient Spotlight: Miles of Gratitude

“Miles of Gratitude”

When the Kahn family’s patriarch, Michael, was diagnosed with Amyloid Light-chain (AL) amyloidosis, he was advised to arrange his final affairs. Amyloidosis is a group of rare diseases, any one of which occurs when misfolded proteins accumulate in the tissue of particular organs in the body. For Michael, it was his heart. Despite the advice and an unsuccessful chemotherapy regimen to treat his case, the family held on to hope tighter than ever.

After asking around for recommendations, the Kahn’s found the Amyloidosis Center at Boston University School of Medicine and Boston Medical Center, ‘an internationally recognized Center of Excellence and a global resource for physicians, researchers, patients, caregivers and families,’ explains Vaishali Sanchorawala, MD, director of the Amyloidosis Center and director of the Stem Cell Transplant Program. ‘ ”When we came to BMC, they said, ‘we’re going to help you,” ‘ says Michael. ‘It was like night and day.’ The team even took the time to meet with his family, answering questions and ensuring everyone understood the disease and his course of treatment. ‘That’s why the program here is so wonderful—it’s a great resource. Even when you’re in the waiting room, everyone there is going through the same thing,’ adds his wife, Sharon.

Under the care of David Seldin, MD, PhD, former director of the Amyloidosis Center*, the first step was a stem cell transplantation, where the plasma cells in the bone marrow creating the misfolded protein would be destroyed with high dose chemotherapy, and replaced with Michael’s own stem cells. The healthy stem cells would then create healthy plasma cells. However, the wedding of Michael’s daughter was just around the corner—it was moved from August to April 2013 in anticipation of Michael not being well. ‘[Dr. Seldin] said, ”I’ll fit you in no matter what. I’ll get this done for you so you will be all set by the time the wedding comes,”’ says Michael. Sure enough, Michael walked his daughter down the aisle just a few weeks after the transplantation. And while the family thought that would be the most he could handle, Michael garnered the strength to also dance with his daughter.

Back at BMC, doctors informed Michael the transplantation did not lead to remission. They had another plan: a clinical trial involving an investigational medication. It worked, and today he is thriving. ‘Mr. Kahn’s incredible journey of fighting AL amyloidosis is inspiring to us all. It is a remarkable story with all the best elements of heroism, courage and a positive attitude towards life,’ explains Sanchorawala. ‘It has been a long road for Michael and his family, but today he is doing wonderfully.’

‘This is an experience I’m choosing to go through. My dad didn’t choose to get this disease. I’m pushing myself because I want to do something that is meaningful in a way where I can represent both my family and the hospital that allowed us to stay intact.’ — Ricky Kahn

With immense gratitude to the hospital and its providers, the Kahn family has always been motivated to give back to BMC. While Michael was in treatment, his son, Ricky, raised $15,000 for the Center through a t-shirt fundraiser. He has since decided to outdo himself by running the 2018 Boston Marathon as part of Team BMC, the hospital’s athletic fundraising team. ‘This is an experience I’m choosing to go through. My dad didn’t choose to get this disease,’ explains Ricky. ‘I’m pushing myself because I want to do something that is meaningful in a way where I can represent both my family and the hospital that allowed us to stay intact.’

Marathon Monday will be significant to the family for a number of reasons. Five years ago, the marathon intersected with the Kahn’s lives when their daughter’s wedding party decided to continue the festivities at a nearby hotel after the wedding. There, they were asked to be quiet—runners were sleeping, in need of rest before they were to take on the historic Boston Marathon the following day. ‘We were opening presents the next day at the house, watching the Boston Marathon on TV. Then, we saw [the bombings at the Marathon finish line] on TV,’ recalls Sharon. ‘Even some wedding guests went into the city to watch the runners. Thankfully none of them were hurt.’

In addition to celebrating their daughter’s fifth wedding anniversary and commemorating the anniversary of the Boston Marathon bombing, the day will hold even more meaning as they cheer on Ricky and revel in Michael’s good health. When it comes to taking on 26.2 miles in honor of his family and BMC, Ricky looks forward to using the challenge as a platform for good. ‘This is an opportunity to rally our network again, which consists of two generations of different groups between me and my parents,’ says Ricky. ‘People are so generous if you give them a reason. This is about telling our story and the fact that this incredible institution is the reason my dad is still here.’

‘It’s going to be emotional and it’s going to be incredible,’ Ricky concludes. ‘It would have been different if it were in memoriam but it’s not, and that’s why it’s a celebration.’

*Sadly, Dr. Seldin passed away in June 2015.      

Miles of Gratitude. Retrieved February 16, 2018 from BMC Stories: http://development.bmc.org/our-impact/stories/miles-of-gratitude/

View all posts