Our journey with Ben began before he was even born.

During a routine prenatal ultrasound, doctors noticed that his left kidney was enlarged. What started as a routine pregnancy quickly became one filled with uncertainty. I was followed closely by Maternal-Fetal Medicine as my amniotic fluid began to decrease. At 30 weeks, I was encouraged to drink nearly a gallon of water each day to help maintain my fluid levels. By 36 weeks, I required hospitalization for IV fluids and monitoring, and at 37 weeks, I was induced after my amniotic fluid dropped again.

After a 15-hour labor, our sweet Benjamin entered the world weighing 7 pounds, 1 ounce. Like every parent, we hoped for the best, but we knew more tests were ahead.

At just 2 weeks old, an ultrasound revealed bilateral echogenic kidneys with multiple cysts. We began our journey with pediatric nephrology, searching for answers. Genetic testing eventually revealed that Ben has 17q12 Deletion Syndrome, a rare genetic condition that can affect multiple organs, including the kidneys, pancreas, liver, and brain. Every child with this condition is different, but for Ben, his kidneys have always been the greatest challenge.

Over the next several years, our lives became filled with doctor’s appointments, hospital stays, surgeries, medications, blood work, feeding tube care, and countless prayers. Ben developed chronic kidney disease, and his kidney function gradually declined to about 19%. Despite everything he endured, he remained the happiest little boy—always smiling, laughing, and reminding everyone around him what true strength looks like.

The transplant journey was filled with both hope and heartbreak. We experienced the excitement of receiving “the call,” only to have one transplant canceled after the donor kidney was found to be damaged during recovery and could not safely be transplanted. We also faced illnesses, including RSV and pneumonia, temporary inactivation from the transplant list, and additional surgeries before he could once again be listed for a lifesaving kidney.

Every setback tested our faith, but every obstacle reminded us that God’s timing is perfect.

Then, on June 10, 2026, our prayers were answered.

Ben received the incredible gift of life—a kidney transplant.

While the surgery was successful, the days afterward were not without challenges. He required close monitoring in the Pediatric Intensive Care Unit, remained on a ventilator while his body stabilized, and developed bleeding in the upper lobe of his lung after placement of his dialysis catheter. Watching your child fight through those first critical days is something no parent can truly prepare for.

Yet, through every challenge, we witnessed miracle after miracle.

The transplanted kidney began to work. His creatinine started to fall. Every lab result brought new hope. Every small milestone felt like a victory. We watched our little boy begin the next chapter of his life with the precious gift that another family so selflessly gave during one of the hardest moments of their own lives.

There are no words that can fully express our gratitude to Ben’s donor and their family. Because of their incredible generosity and selfless decision, our son has been given the opportunity to grow, play, dream, and simply be a kid.

Our journey isn’t over. A kidney transplant is not a cure for kidney disease—it is a lifelong commitment. Ben will always require medications, routine lab work, clinic visits, and careful monitoring to protect his precious gift. But today, he has something we prayed for every single day: a future filled with possibilities.

We continue to share Ben’s story to raise awareness about 17q12 Deletion Syndrome, pediatric kidney disease, and the life-changing impact of organ donation. We hope our journey offers encouragement to families facing similar diagnoses and reminds others that hope can exist even in the most difficult seasons.

Ben is more than a diagnosis.

He is brave.
He is joyful.
He is resilient.
He is deeply loved.

His story is one of faith over fear, perseverance through uncertainty, and the extraordinary power of hope.

June 10, 2026, will forever be the day our family’s prayers were answered—the day Ben received his second chance at life.