Boston’s 122nd Marathon, under some of the most intense weather conditions ever experienced on this marathon field; April 16, 2018 was the day I vowed to run for Team BIDMC’s Kidney Research Department in honor of the one person that was out there literally braving the storm and showing us how to do it with a smile.
Let me tell you why I’m here. My niece, Noemi Perez, a champion for kidney disease, lives with Alport Syndrome. Now, before I explain what that is, know that this young woman is a mother, a wife, loving family member, beloved office manager, and recently earned her Six Star World Major Marathon finisher medal earlier this year ending the series off with a 30 minute PR. Noemi is blessed with the ability to run against the odds, and she does so because of this. So, when my daughter Laura and I set ourselves to catch Noemi run Boston in 2018, we were both awed when at Mile 20, against all odds, under the freezing rain and wind, we see Noemi beaming ear to ear with the brightest of smiles. She later tells us that she smiled, laughed, and enjoyed herself the entire 26.2 miles from Hopkinton to Boylston. Why? How? Because she ran with purpose, with heart, and for a cause that affected not only her, but many in her immediate maternal family.
Noemi was running for Team BIDMC’s Kidney Research Department and successfully raised over $10,000 for the cause, 100% of which goes directly to the research. Having followed her journey, reading every blog post she submitted as she journaled the 18 weeks leading up to that big day, I was invested long before I fully grasped how truly moved and inspired I was to do the same. So often, we go about our lives and forget how each action and interaction may affect positive change in the world. It was never asked of me to “take the baton,” but here I am, and now I’m asking you to take it on as well and help me raise $10,000 so that we continue the momentum that came from a hug and a smile.
Alport Syndrome is an inherited disease. In Noemi’s case, it passed through generations on her mother’s side. Alport is a genetic condition characterized by kidney disease, hearing loss, and eye abnormalities. People with Alport Syndrome experience progressive loss of kidney function. Almost all affected individuals have blood in their urine, which indicates abnormal functioning of the kidneys. Many people with Alport Syndrome also develop high levels of protein in their urine. The kidneys become less able to function as this condition progresses, resulting in end-stage renal disease. There are three genetic types of Alport Syndrome. Noemi has X-linked Alport (related to the X chromosome) which is the most common form of Alport Syndrome. Boys with this type are severely affected and almost always develop kidney failure at some point in their lives. Girls usually have milder symptoms than boys, but they too can develop kidney failure.
I remember asking Noemi what made her start to journal her training and she said "beyond my personal motivation in running for this cause, if I could inspire just one person out there to believe they can accomplish anything, sharing these intimate details would be well worth it.”
I hope my story inspires you, the same way I too was inspired and ask that you please help me in reaching this goal. Any contribution will go a long way to continue medical advancement in the multitude of kidney diseases. No amount is too small! Thank you.