Mother Shares Journey with Son Born with Rare Skin Condition

When Leeanna Bentley from Sheffield gave birth to her son Caiden in June 2019, the delivery room fell silent. Caiden was born five weeks premature and wrapped in a yellow wax-like membrane, a condition that surprised even the medical team at Barnsley Hospital. Despite reassurances about his health during her pregnancy, Leeanna had sensed that something was wrong.

Leeanna, 35, had been concerned for months. Four months into her pregnancy, she noticed that Caiden was unusually still in her womb. “I have older children, so I knew what to expect in pregnancy,” she explained. “He wasn’t moving much at all, and I was so concerned that I went to the hospital. But all the checks showed he was absolutely fine.”

The birth revealed a stark reality. Caiden was diagnosed with congenital ichthyosis, a rare skin disorder that affects approximately one in 300,000 people worldwide. The condition meant that his skin grows and sheds at an alarming rate, leading to extreme fragility and vulnerability.

Understanding Congenital Ichthyosis

Ichthyosis is a genetic condition characterized by dry, scaly skin, which can vary in severity. In Caiden’s case, he was born with what is known as a collodion membrane, a shiny film covering his skin that can cause eyelids or lips to turn inside out. This condition requires constant management, as the impaired skin barrier increases the risk of infections and dehydration.

Leeanna described the first moments with her son: “Caiden looked like a little Oompa Loompa when he was born, because he was yellow.” His initial fragility meant he was rushed to special care, leaving Leeanna panic-stricken and desperate to hold him.

“I was not allowed to hold him until he was two weeks old, and even then, I had to wear gloves,” she recalled. “I could not kiss him because his skin meant he was so vulnerable to infection.”

After three weeks, Caiden was allowed to go home, but the challenges were far from over. Leeanna faced a steep learning curve with minimal support. “He had to have cream applied all over his body every two hours, so I barely slept. His skin was bright red, like a little tomato, and when it peeled off, he would cry in pain,” she said.

Life with Ichthyosis

Living with ichthyosis comes with daily routines that can be overwhelming. Children with this condition often require rigorous skincare regimens to manage symptoms like dryness, scaling, and pain. For Caiden, the process is continuous and demanding.

The skin’s ability to regulate temperature is compromised, leading to increased risks of overheating and infections. Leeanna explained that if Caiden catches a cold, he can shed multiple layers of skin at once. “Each bug could be deadly for him,” she said, emphasizing the constant vigilance required to protect her son.

Despite the challenges, Caiden has flourished into a cheerful six-year-old. He is currently enrolled in a mainstream school where he receives specialized support. “He loves Peppa Pig and playing on his swing,” Leeanna shared.

Recently, Leeanna has launched a GoFundMe campaign to raise money for a nano bubble machine, which could help ease Caiden’s bathing process. “The machine will help hydrate and heal his skin,” she explained. “It is the only thing I can find which I think will help ease his pain.”

In a moment of relief, Leeanna learned that her twins, born in April 2021, are healthy and do not have congenital ichthyosis, despite the risks associated with the condition.

Caiden’s journey has been filled with hardships, but Leeanna remains inspired by her son’s resilience. “He is a little warrior,” she stated proudly. “Every day, he shows me strength and positivity in the face of adversity.”

Through her experiences, Leeanna hopes to raise awareness about congenital ichthyosis and the daily realities families face. Her story serves as a powerful reminder of the strength of the human spirit and the unbreakable bonds of family.