Stef Dunphy grew up with a father who lived with x-linked agammaglobulinemia, a primary immunodeficiency disease (PI). Sadly her father, David, passed away in 2006, and Stef continues to honor him in many facets of her life.
This upcoming November, Stef will be running in the TCS New York City Marathon in support of IDF and in memory of her father. She has raised over $2,000 in support of the PI community and has generated much-needed awareness of these rare, chronic diseases.
Read her inspiring and heartfelt story below, and learn more about how her life has been affected by PI and how she plans to help those still living with these diseases today.
Pictured: Stef Dunphy
“As a young child, I never fully understood why my father, David J. Russo, was visited by a nurse every three weeks while he sat at the kitchen table for an hour attached to an IV pole.
My father was a quiet, humble man who didn’t want to burden his family with his health issues. He always amazed me though, as he was such a bright, intelligent, logical, dedicated, humorous and musically-inclined man who would do anything for his family.
My father worked full-time and commuted to Manhattan by bus and train every day. When he came home around 7:00 every night, I remember I would run to the door to give him a hug, then we would sit down at the kitchen table and watch Jeopardy and Wheel of Fortune on our little black and white TV while we ate dinner. My loving mother had to specially prepare a gluten-free meal for him as he suffered from celiac disease, which was one of the many issues that arose from his PI x-linked agammaglobulinemia.
Pictured: David J. Russo
X-linked agammaglobulinemia is one of over 350 types of PI. People who live with this disease lack the ability to produce antibodies and are prone to develop infections. Infections most commonly occur in the middle ear, sinuses, lungs, as well as the bloodstream and internal organs. Gastrointestinal problems often arise as well, particularly abdominal pain, diarrhea and poor growth. Patients sometimes suffer from skin infections and are prone to common bacteria.
During his lifetime, David had complications with all of these issues and more. Treatment of x-linked agammaglobulinemia included intravenous infusions of gamma globulin every three weeks, which was necessary for survival.
In 2006, my father was diagnosed with squamous cell cancer in his jaw. The doctors believed this was an outcome of his PI. He underwent an eight-hour surgery in which they removed bone from his leg to replace the cancerous piece of his jawbone. This surgery resulted in my father not being able to speak or swallow properly, and following many complications with chemo and radiation, my father passed away six days after he turned 56-years-old on December 29, 2006.
To me, PI awareness means sharing your story with others so that no one feels like they are alone, whether they are suffering from a PI or are the caretaker of someone living with PI. The more information we share, the more resources, assistance, comfort and hope we can give to others. I strongly feel it is always important to speak up for yourself and your loved ones by exploring various options and building a community of people who share a common bond.
After researching various immune deficiency organizations, I chose to support the Immune Deficiency Foundation (IDF) in my endeavor to run the upcoming 2018 TCS New York City Marathon on November 4, 2018.
While I had already qualified to run the race, I felt that I needed a motivational inspiration to complete this extremely challenging marathon course. My father is always with me every day in my heart, so I knew I would want to run this race for him.
Even though IDF is based in Maryland, I wanted to promote PI awareness by bringing IDF to New York. I started a CrowdRise page to share my story and provide a place that allows my family and friends to donate to my cause. I started off with a goal of $500, which I have quickly surpassed and have now collected over $2,000. I have also designed a marathon shirt for my cause with the name of my campaign on the front “Running for (DJ) Russo” and a sketched photograph of my father on the back with the phrase “A Beautiful Life,” which describes my father’s life as well as the lives we all lead. Despite the hardships and obstacles we face in our daily lives, there is always a glimmer of hope, faith, happiness and love, which is beautiful.
My advice for others who may be looking to promote PI awareness and raise funds is to first contact IDF, and then set up a fundraising page similar to the one that I created. You can also get involved by signing up and joining one of the many walks located through the country – IDF Walk for PI. There is even a Virtual Walk! You can subscribe to the Primary Immune Tribune (the IDF e-newsletter) as well.
If you would like to support IDF while promoting PI awareness, you can donate to my campaign.
I am proud to be representing IDF and PI in memory and in honor of my father, David J. Russo. I hope to see all of my fellow New Yorkers cheering me along the marathon course on November 4, 2018!”
Thank you for sharing your story with us, Stef. If you are interested in sharing your story, please e-mail us at firstname.lastname@example.org.