Voices of PKD: TJ Sullivan
I believe in the power of advocacy, support and hope. My name is TJ Sullivan, and while I may not have polycystic kidney disease (PKD), the effects of this disease hits close to home, and the cause to fund research and a cure is incredibly close to my heart.
My grandmother (whom I lovingly call ‘MomMom’), Theresa LaBarck, has survived with PKD for over 30 years. She is currently in renal failure and in dire need of a living kidney donor to save her life. Since 2015 (at the young age of 19!), I have been advocating and volunteering for the PKD Foundation. I’ve hosted four large scale community fundraisers, to raise valuable funds for this organization. My family and I have participated in many New Jersey & New York City Walk for PKD events, and continue to spread awareness through all social media platforms. I’ve done this because I believe in the PKD Foundation’s mission to discover and deliver treatment and a cure for polycystic kidney disease, while providing education and support for patients and their families. Driven by Mommom’s declining health and the community’s support, I launched a campaign for Mommom in 2019, aptly named “A Kidney For Mommom.” Our campaign was born out of a desire to find a living kidney donor for my grandmother, while raising money for post-op medical expenses, as well as promoting awareness for organ donation, PKD and the Foundation.
Mommom is an amazing human being, but an even more amazing grandmother. For as long as I can remember, she has been my guiding light and one of my greatest loves. She’s provided me with endless support, endless love, endless laughs and complete generosity. Grandmothers ‘give’ to their grandchildren, but you’d be hard pressed to find anyone who gives like she does. While the birthday and Christmas gifts might be great, the biggest gift she’s given me is the lesson to fight and persevere. She has been determined to win this fight against PKD since her initial diagnosis. Her positive, young-at-heart attitude and determination has kept her alive for over thirty years. However, her quality of life has significantly decreased in recent years. Her PKD symptoms range from nausea, fatigue, high blood pressure, headaches and more. She has an aneurysm that gets regularly checked and she receives dialysis three times a week. While I wish nothing more than for Mommom to be healthy, her battle with this disease has afforded us the opportunity to strengthen our bond as grandma and grandson, while forming strong ties within the PKD community.
The PKD community and our personal friends and family have supported our campaign since the start. My goal since the beginning, was to form a strong social media presence to further promote our campaign and mission. I continue to post regular updates on Mommom’s condition, while sharing pictures and videos to further get the word out. We are active on Facebook and Instagram, with a TikTok page in the works. We have a campaign website, which provides information on our personal story, the benefits of organ donation, and even includes an online store for supporters to purchase personalized “A Kidney For Mommom” merchandise. Just last month, in March of 2023, I hosted our campaign’s first “A Kidney For Mommom” donor drive, where we continued to spread the word of Mommom’s dire condition and our quest for a living donor. Local news media, NEWS12NJ even came to the event and aired a piece on the drive!
I started this blog with the statement, “I believe in the power of advocacy, support and hope.” I’ve seen the benefits of advocacy. I’ve seen the faces in the audience of our fundraisers as I explain the ramifications and effects of this disease. I’ve seen what a social media “share button” can do. I’ve seen how the prospect of “hope” can positively impact patients and caregivers. I’ve made it my personal mission to continue to advocate for the PKD Foundation’s mission and Mommom’s battle with polycystic kidney disease. I’ve made it my personal mission to continue to educate the public, my social media followers, friends and family on this disease and this cause. I’ve made it my personal mission to continue to support Mommom as we navigate her end stage renal failure, while continuing to support other families and caregivers that understand the excruciating and intricate details of this disease. Most importantly, I’ve made it my personal mission to cling onto hope. I hope for treatments and/or a cure for future generations of PKD patients, and I hope to find a living kidney donor to save Mommom’s life.
If you would like to follow along on our journey to find Mommom a kidney, you can find us on social media below: