My Brother Michael

by Jackie Clayburgh

BOSTON, MA — I am a Program Director with Specialized Housing. I grew up in Portsmouth, NH. I’m the mother of two guinea pigs, and I have two younger siblings. My brother, Michael, has Down syndrome. My parents always wanted Michael to have the same opportunities as my sister and I, so from an early age he was involved in speech and occupational therapy, and he attended public school where he was involved in sports and many extracurricular activities. 

Michael is now 30 years old, has three jobs and owns his own dog bone company (Bow- Wow Bones, www.bow-wowbones.com). At times his schedule is busier than my own. Michael is an active member of his comm-unity with many friends and eventually plans to move into a group home in Portsmouth. 

Among his many accomplishments, Michael’s biggest to date may be a clinical vaccine trial which he has participated in at Massachusetts General Hospital for the last four years. A clinical trial which could potentially lead to a cure for Alzheimer’s disease. 

People with Down syndrome are at high risk of developing Alzheimer-like dementia due to a defective gene found on the 21st chromosome. Since Michael has an extra 21st chromosome his chances of developing dementia increase significantly as he ages, and by age 50 half of the Down syndrome population is highly susceptible to the disease. 

The intention of this vaccine is to harness the body’s immune system by consuming plaques to prevent the onset of dementia, not only in the Down syndrome population, but the general population as well. This study is especially important to Michael and our family because dementia runs on my father’s side. My great grandmother had three children and she, as well as my great aunt, both suffered from Alzheimer’s disease in their elderly years. As my grandfather aged he was diagnosed with Primary Progressive Aphasia and as the disease progressed I watched his personality change while he slowly lost his ability to communicate with those of us around him. My father has three brothers and between them there are eight living grandchildren, so, given our family history the reality that one of us could develop dementia is not inconceivable. My grandpa is a retired veteran, surgeon, and politician, and to see such an articulate man be reduced to the intellect of a toddler in the years before his death was difficult to watch. 

Given that my brother has Down syndrome and a family history of dementia, the realization that the odds are even more stacked against him makes the need for an Alzheimer’s cure all the more important. My parents have done a wonderful job in planning for Michael’s future once they are no longer alive, but there will come a time when my sister and I will be responsible for managing the majority of his care. I can only hope that when that time comes I won’t have to worry about the looming threat of Alzheimer’s disease because Michael was at the forefront of finding the cure.

Editor’s Note: Michael’s story was featured in a WBZ Channel 4 News segment in August 2018. To watch that segment and read more about the clinical trials visit: tinyurl.com/down-syndrome-alzheimers