Colton’s story is one of triumph over adversity, a testament to the power of medical innovation, teamwork, compassionate support and an unbreakable family bond. 

In the dimly lit room of Women & Babies Hospital in Lancaster County, Pa., a tiny heartbeat pulsed with determination. Born prematurely at 35 weeks, Colton entered the world facing overwhelming odds. His delivery had been fraught with complications, leading to a series of health challenges that would forever alter his family’s life.  

From the moment he took his first breath, Colton struggled. Diagnosed with shoulder dysplasia and hypoxic-ischemic encephalopathy (HIE), he faced severe breathing difficulties that required the intervention of a ventilator. When it became clear he needed the most specialized newborn care, Colton was swiftly transported to Children’s Hospital of Philadelphia (CHOP), where a multidisciplinary team awaited him at the Level IV Harriet and Ronald Lassin Newborn Infant Intensive Care Unit (N/IICU).   

On his first day at CHOP, Colton’s fight intensified. He coded twice, and immediate resuscitation became a lifesaving necessity. Doctors placed him on extracorporeal membrane oxygenation (ECMO), a procedure that temporarily took over the function of his heart and lungs, allowing them a chance to heal. In the midst of this turmoil, Benjamin Laskin, MD, Chief of CHOP’s  Division of Nephrology and an attending physician in the Kidney Transplant and Dialysis Program, evaluated Colton and suspected a dire condition: autosomal recessive polycystic kidney disease (ARPKD).  

Colton remained on ECMO for nine days, and he underwent continuous renal replacement therapy (CRRT), a form of kidney dialysis. During this time, he also battled seizures and suffered a stroke.   

A critical decision about Colton’s kidneys  

When genetic tests confirmed the diagnosis of ARPKD, Dr. Laskin explained the gravity of the situation to Colton's parents, Jennifer and Kyle. The condition was devastating Colton’s kidneys and affecting his lungs, liver and pancreas, leaving him in a critical state. Colton’s kidneys were so enlarged they stretched his belly to the size of a basketball.  

It was clear Colton’s kidneys could not function effectively. The care team — which included Dr. Laskin, CHOP attending neonatologist Rebecca Simmons, MD, attending pediatric surgeon Myron Allukian III, MD, and attending pediatric urologist Sameer Mittal, MD, MSc — recommended removing both kidneys. A wave of apprehension washed over Jennifer and Kyle, but they knew the surgery was critical for their son’s survival.  

After enduring the surgery, Colton continued his battle. He faced a diagnosis of spastic quadriplegic cerebral palsy, which added to the family’s challenges.   

When he was 7 months old, he was transferred to CHOP’s Pediatric Intensive Care Unit (PICU). He coded twice more there and faced an ongoing fight against infections and complications. He was finally discharged from the hospital when he was 10 months old. 

Colton is now 2 years old. As he has grown, his family has faced many challenges associated with his dialysis treatment. They must make frequent hospital visits for treatments and check-ups, follow special dietary guidelines that require careful meal planning, and manage the financial and emotional burdens that come with these demands. Jennifer lost her job and has become Colton’s full-time caregiver, adding to the strain on the family.  

The CHOP dialysis team knows it can be particularly hard for low-income families to meet the dietary needs of a child on dialysis. In April 2024, they launched the Food Opportunities to Improve Outcomes in Dialysis (FOOD) project supported by The GIANT Company, CHOP's Division of Nephrology, and CHOP Cares Grant, aimed at addressing the food insecurity that affects many families in the dialysis unit. With nearly 52% of families reporting food insecurity, this initiative has become a lifeline.  

Colton’s participation in the FOOD project opened new doors. He developed an interest in trying food for the first time, a simple act that filled his parents with joy.   

“Seeing him want to eat is beautiful,” says Jennifer. The FOOD project includes a dry pantry where the family can choose renal-friendly foods that ensure Colton can enjoy meals without risking his health. “It’s not just about food; it’s about quality of life. We’re so grateful for this support.”  

The journey for Colton and his family has been arduous, and it’s far from over. He now faces the prospect of a liver, pancreas and kidney transplant. But within Colton lay an indomitable spirit.   

“We believe there are no limits to what he can achieve,” says Jennifer. “He shows us every day that he is a fighter. He can sit up, say ‘momma,’ blow kisses, and smile. Every small victory feels monumental.”  

“CHOP saved his life, and we are so grateful,” she adds. “The CHOP care team has hugged us, prayed with us, taught us so much and stood by us every step of the way. Without CHOP, we wouldn’t have the tools to be the best parents we can be. We are great advocates because we had such great teachers to help us become that voice for Colton.”