Single mother, Kim Asmar, has had the privilege of raising her two daughters, Savannah and Madison, ages 10 and 8, respectively. While the first 2 ½ years of Savannah’s life was that of a typical newborn and toddler, her story quickly changed.
Savannah was starting to swell, sending Kim into a spiraling confusion wondering what was happening to her daughter’s health. Like most parents of Nephrotic Syndrome patients, Kim thought it was allergies at first because as the day went on, the swelling in Savannah’s face would go away. But as days turned into weeks, her entire body started to swell and that’s when Kim instinctively knew something was not right.
Learn more about Savannah’s diagnosis and journey with Nephrotic Syndrome, as well as Kim’s resilient fight to help her daughter, all while supporting NephCure Kidney International’s mission along the way. We are grateful to our volunteers across the globe, like Kim!
NephCure: Can you tell us about Savannah’s journey with Nephrotic Syndrome?
Kim Asmar: As soon as I heard the words “Savannah has Nephrotic Syndrome,” uttered from the doctor’s mouth, I knew our lives would never been the same. Our “new normal” consists of testing her urine every morning and praying that there is no protein.
Every child’s story is different. Savannah’s cause for the Nephrotic Syndrome is called Minimal Change Disease. When Savannah starts spilling protein, she needs to take prednisone steroids. Once she responds to the steroids, we need to get a negative reading for 3 days, then we start to decrease the medication.
However, Savannah is a frequent relapser and is steroid dependent which makes managing this disease even more difficult. Although the steroids help keep her in remission, every time she catches a cold, she relapses and needs an even higher dose of steroids.
In total, she has been on steroids for 5 years, and was on a transplant medication for 4 years. This September our journey took a different road and Savannah was able to get off all her medications. For a total of 10 weeks, we didn’t have any medications and we only tested her urine once a week. Then, we got thrown a curve ball when we tested her urine one morning and the test came back positive for protein.
We are now back to testing her urine daily and back on high doses of steroids twice a day. Just when we thought all of this was behind us, we are back at square one. Savannah is a trooper and you will always see a smile on her face. But behind closed doors, you can see the medication and the physical appearance bothers her. When she cries and says she wants to be “normal” it breaks my heart.
NephCure: How did you first get involved with NephCure?
Kim Asmar: When Savannah was first diagnosed, I did not know anything about Nephrotic Syndrome. I did a lot of research online and decided to start a Meet Up group for people who had kidney disease or knew someone who had kidney disease. It was at that time, I learned about NephCure Kidney International and reached out to see how I could learn more for myself and Savannah and how I could help others.
NephCure: Can you highlight some of the successes you’ve had hosting an event to benefit NephCure over the years?
Kim Asmar: This February will be the 4th Annual Strike Out Against Kidney Disease event I’ve hosted. Over the past few years, we have raised several thousand dollars for NephCure. In addition, a lot of personal connections and friendships have formed.
This year, our goal is to raise awareness for all those that suffer from kidney disease. Our hope is that one day there will be a cure! Let’s strike out kidney disease together!
NephCure: Why is it so important for you to be involved with NephCure and our mission?
Kim Asmar: It is important for me and my family to be involved with NephCure so we can be part of a family where we understand what one another is going through. Everyone’s road they travel is different. However, there is a commonality amongst everyone. Every day is a new journey. Being that Nephrotic Syndrome is so unpredictable, you never know what each second is going to bring.
To learn more about Kim’s New Jersery Strike Out Against Kidney Disease event, please visit give.nephcure.org/StrikeOut