When her healthy, eager kindergartener, Wilson, woke up with swollen eyes, Andi could never have imagined what the next year would bring to her and her family. Dark days filled with endless doctor appointments, immense amounts of medication, and huge disappointments ultimately led to her son's life changing diagnosis, Nephrotic Syndrome. Five years later, with the steadfast help from her community, Andi and her husband founded The Nephrotic Syndrome Foundation (NSF) to offer direct support for those children and families in this very same battle.
We sat down with our dear friend, Andi, to learn about her long-term pursuit of making NSF a household name. Me To You Box is also thrilled to join the NSF objective by supporting the 'Little Angels' care package program while families travel this very long and unrelenting journey.
What Is Nephrotic Syndrome?
A life changing diagnosis. Nephrotic Syndrome is a rare and serious auto-immune disease affecting the kidneys, causing them to shut down. There is no known cause or cure. Treatments are extremely 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 and out of the doctor's office and hospital seeking a treatment that keeps them in remission while trying to manage the side effects.
Why Is The Nephrotic Syndrome Foundation So Important?
We have never been so grateful for the beautiful gift that each day brings. No one can change the fact that these kids have been diagnosed with this unimaginable disease. Often our days are filled with doctor appointments, labs, missed school and events, and administering upwards of 20 pills a day to Wilson. The physical and emotional effects, both short and long term, are really tough on us all. However, with NSF, we CAN change lives. We can offer support & love, education & community, and we can ensure that neither patients, nor their parents or siblings, have to travel this road alone. We have BIG plans to help children diagnosed with this disease. I love this quote as it pertains to my personal mission with NSF and to all the mothers and fathers caring for a child with this disease:
"You have been assigned this mountain to show others it can be moved."
What Has Been Your Most Rewarding NSF Experience To Date?
Other than becoming a mom! In 2019, The Nephrotic Syndrome Foundation hosted our first ever family weekend camp - Camp NSF. We had over 20 families with a child battling Nephrotic Syndrome attend, some coming from as far as Texas and Oregon. We had an amazing experience. It was incredible to see families who have never met each other, instantly bond - as kids, siblings and parents in this journey. Their gratitude, grace and strength was inspiring. Other than becoming a mom, this has been my biggest life's achievement.
What Other Support Programs Does NSF Currently Offer And What Will 'Little Angels' Add To This Platform?
My family knows first-hand how tough the Nephrotic Syndrome fight is, and often how long and lonely the journey with chronic illness can feel. Currently NSF's programs include things like Backpacks of Hope - a program to provide connection, education and support to newly diagnosed families, Patient Family Grants and other direct support programs, and ongoing health and wellness education. This year we are SO excited to launch our new program 'Little Angels' in conjunction with Me To You Box. Through this program we hope to deliver love and light to those who have been in the trenches with this unimaginable disease for some time, and who find themselves in an especially tough spot. Sometimes just a small gift of unsolicited kindness, love and support is all a child, sibling or parent needs to help them weather the storm or get them through to brighter days.
Why Did You & NSF Choose Me To You Box As The Partner For 'Little Angels'?
I chose Me to You Box because I have the utmost respect for their mission and product. Like me, they understand that a well curated care package offers much more than the value of the gift inside. It sends a message of support, love and true caring. Receiving that message can do wonders for a child's (or a parent's) spirit. Brianna and Annyssa run their business in a way that I trust, and they understand just how important quality is when these packages are put together. I knew each package would be just perfect and that our brand would be in good hands. Brianna, the Co-Founder, was full of compassion for our effort from the very beginning and I knew when we launched, Me To You Box would be the ultimate partner for us to help us deliver our mission.
Where Do You Find Your Inspiration?
My Mom. She is the ultimate human being. Extremely smart, capable, undeterrable (from anything), beyond kind, hilarious, humble, loving and the most gracious host I have ever met.
About Andi Callaway
Everything happens for a reason. Andi is the President and Founder of the Nephrotic Syndrome Foundation, an Alamo, CA, based non-profit dedicated to supporting children diagnosed with Nephrotic Syndrome and their families. After having kids and moving to the East Bay, Andi served as Chairman of another local non profit, Buena Vista Auxiliary in 2011, which unknowingly helped prepare her for her work with The Nephrotic Syndrome Foundation!