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Our Story

Ryleigh’s Kidney Journey

 

Our beautiful daughter Ryleigh came into this world on December 30, 2014. Ryleigh's kidney journey began like many other nephrotic children. Around one year old we began noticing a pattern of swelling in her eyes and belly (edema). At 18 months old, after being misdiagnosed as having allergies, her edema eventually became so severe that we did our own research and demanded a test to check for protein levels in her urine. This is the marker for Nephrotic Syndrome, a condition where the filters in the kidneys leak protein and other nutrients into the urine in mass quantities. On October 31st of 2016 our suspicions were confirmed and we packed our bags and headed to Birmingham Children’s hospital. Initially diagnosed with the autoimmune disease called Minimal Change Disease, we found comfort that it was possible to gain “remission” with steroids and she would likely grow out of it. We had a difficult few months, spending 19 nights on and off in the...

Updates

 

Ryleigh October update

Ryleigh has been good the last few weeks, aside from an emergency room visit last month to put stitches into a busted chin she got from a slip and fall into our coffee table. Classic 4 year old stuff! Lucky for us that was an easy fix compared to Continue Reading »

Ryleigh's first day of Pre-k!

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Dialysis surgery postponed, Ryleigh has first day of pre-k

We were fortunate enough that we were able to postpone Ryleigh's surgery for the PD dialysis port. Her labs aren't getting any worse, her hemoglobin has increased to a manageable level now that we are on Retacrit shots twice weekly. Her appetite is Continue Reading »