Andi and Tucker Callaway's family was changed forever when their son was diagnosed with Nephrotic Syndrome at six years old. Andi will never forget the day when her eager and typically healthy kindergartner woke up with severely swollen eyes and legs - the beginning of their seven-year journey fighting this disease.
What followed is described by Andi as dark days, filled with doctor appointments, lab visits, managing 20 pills a day, struggling with the short and long terms side effects of the multitudes of medications, and quarantine at times to avoid illnesses that lead to further complications.
Nephrotic Syndrome (NS) is a rare and serious auto-immune disease affecting the kidneys, causing them to shut down. It prevents the kidneys from properly filtering blood from the body. Consequently, the body cannot keep the right balance of protein and liquid inside the bloodstream, causing liquid to seep out from the bloodstream into the tissues around it.
What Andi discovered early on in their battle with the disease, was a lack of support for those diagnosed with NS. The challenges are great. There is no known cause or cure for Nephrotic Syndrome. Treatments are limited and consist primarily of transplant and cancer medications, all of which have extreme and often permanent side effects. Many patients are children who spend the majority of their days in doctors' offices and hospitals, trying to find treatments that keeps them in remission, while also struggling to manage side effects.
For the Callaway's son, Wilson, it took three full courses of immune-suppression medications to get him into a steady remission, and then he continually battled infections over the years. Consequently, Wilson generally missed over 50 days of school per year, and endured long surgeries to address chronic infections caused by the medications. Andi and Tucker live with fear that there will one day be an infection that their son can't overcome.
The Callaways credit their community with helping them raise over $900,000 in their fight, enabling them to establish a formal avenue for direct support for those battling the disease. The Nephrotic Syndrome Foundation, a northern California East Bay non-profit, was founded in 2017 to support the ongoing search for a cure, and to provide educational resources, peer support, and camp opportunities for afflicted children and their families. Andi and Tucker Callaway serve as its co-presidents. Learn more about the Nephrotic Syndrome and the Callaways' journey with the disease in this video clip.
"Tucker and I founded the The Nephrotic Syndrome Foundation with the hope that no mother, father, or child should ever have to travel this journey alone. Every dollar donated makes a huge impact on these children and their families."- Andi Callaway
The foundation's biggest fundraiser is the annual Game Day event. This year's event will be held on August 25, 2019, at the Oakland Coliseum. A ticket purchase from the foundation includes a pre-game tailgate event with food, drinks, games, music, and more. Cross-bay rivals the Oakland Athletics and the San Francisco Giants play ball in the Battle of the Bay, and kids get to run the bases on the field. To attend a future Game Day visit The Nephrotic Syndrome Foundation (NSF) to learn more. Support the organization directly by clicking on the link below. Your financial support goes directly toward NSF's mission of supporting pediatric patients with Nephrotic Sydrome and their families.
"I love the energy at Game Day! I love seeing our foundation's name up on the big jumbo-tron! More than anything, I love putting on a fabulous top-notch event for our guests that is both fun and meaningful!"- Andi Callaway
The organization continues to grow, now offering various programs, including Finding Health sessions, which focus on topics like managing Nephrotic Syndrome in school, healthy eating, and mental health for those diagnosed. Peer to peer sessions are formed, where kids and/or young adults are gathered to discuss challenges, emotions, and tools used in navigating their diagnosis. Parents have their own peer groups as caregivers. All sessions are offered at no charge.
Andi shares, "One of the toughest things about this disease is that there are so many unknowns. It can sometimes go away as quickly as it came or the child can outgrow it; however, it can also turn into a more significant version of the disease, ending in end-stage renal failure, transplant, or worse. No one can change the fact that these kids have been diagnosed with this tough disease. We can offer support, love, education, and community."
Camp NSF is another valuable program and is hosted by the Nephrotic Syndrome Foundation in partnership with The Taylor Family Foundation in Livermore, California. This is a weekend family camp that is offered to all pediatric patients diagnosed with NS and their families. "Last year we hosted 25 families at Camp NSF; it was simply magical," Andi says. Some of the camp highlights include therapy dogs, horseback riding, campfires, a ropes course, a magician, arts and crafts, night hikes, and movie nights." Click here to view more photos of last year's camp.
Andi is thrilled to talk about the impact of the foundation's Backpacks of Hope program, which continues to expand. Enclosed in the packs are medical supplies, educational materials, and comfort items, including a kidney-friendly cookbook, over-ear headphones, warm blanket, water bottle, and information on clinical trials and community events, among other useful items. Priority is given to patients of UCSF, LPCH Stanford, and Kaiser Northern California; however, the foundation works to fulfill as many requests as is possible from outside the Bay Area. Andi says, "We hope to deliver over 100 backpacks by the end of 2019. It's so meaningful to the children and families who receive them. We love being able to bring a little love and light to these young warriors in what is otherwise a very dark journey."
"We received the backpack today! Thank you all so much for everything! Bay loved it- especially the blanket, headphones, and water balloons. And my husband teared up when he read the homemade card (and he's not the crying type!) We appreciate it so much."- Testimonial from a Patient Mom (Facebook)
Designed for newly diagnosed young patients and their families, Backpacks of Hope is one of the foundation's meaningful programs designed to provide connection, education, and support to those diagnosed with this syndrome. Learn more, including about the Patient Family Grants program, at The Nephrotic Syndrome Foundation.