Tyler and Jaxon L.

Tyler and Jaxon began their journeys at birth but went undiagnosed for their first few years of life. We noticed swelling around their eyes and bellies but it was always considered to be related to seasonal allergies. It wasn’t until Tyler was 3 when his urine was tested to rule out a UTI and high levels of protein were discovered. We were referred to the local children’s hospital and he was diagnosed with Nephrotic Syndrome. Once a patient there, Tyler had a kidney biopsy, genetic testing, urine and blood lab work, kidney imaging, and he was prescribed prednisone. About 6 weeks after the genetic testing, Tyler turned 4 and we found out his NS was caused by 2 mutations within the NPHS2 gene.

Once we found out Ty’s NS was due to genetics, we decided to test Jaxon’s urine at home since he was potty training at 18 months of age. Sure enough, high levels of protein showed up on the dipstick. We messaged Tyler’s nephrologist who began to follow Jaxon as well and assumed he had the same genetic mutation. Jaxon was spared going on prednisone but we had to wait until he was 3 to go on any type of ACE/ARB medication. Our insurance would not cover genetic testing for Jaxon. At the time few companies were willing to test Jax at a reasonable rate. We found a research study that was willing to take our family on and give us results for Jaxon on an experimental basis and the results confirmed Jax had the same 2 mutations on the NPHS2 gene as his brother. Ironically, he was also 4 when we received the results.

Their kidney function is still stable. but we know the odds are against us and there is a very strong chance their function will begin to decline at some point. Neither of the boys have hit or will likely hit a true remission. They spill protein every day. Ty and Jax are followed by nephrology every 6 months for urine and lab work to monitor their kidney health. Jaxon is mildly anemic due to his chronic disease and both fluctuate with Vitamin D levels. Their albumin is always low and their cholesterol is borderline high to high. They tend to get hit hard with illnesses more so than the average kid. They struggle with anxiety and a little depression from time to time. They both wake up daily with puffy eyes and occasionally swollen bellies.

Even with their diagnosis, both boys are thriving! Ty and Jax stay active with year-round track. They run a mean indoor season as well as an outdoor season. Tyler qualified in districts and regionals which allowed him to compete in the AAU Junior Olympics in 2022. Jaxon qualified in districts in 2022 and competed in regionals which was amazing considering he started track a month prior! Jax also has a love for soccer which he plays in the fall. They LOVE anything and everything to do with nature from hiking to relaxing on a beach somewhere. We are aware of the statistics with their diagnosis but we have a passion for not letting it get in the way of living.