Meet Our Families

"When I was pregnant I always referred to Najah as my little butterfly. I told everyone that this child will be unique, not like anyone else. Butterflies go through a complete metamorphosis before they bloom. You will never see two butterflies alike due to their unique patterns. Little did we know that Najah would be exceptionally unique." – Natalie Carlise

Jahred and Natalie Carlise find pure joy in watching their toddler, Najah, be a happy go lucky girl, laughing and pulling the toilet paper off the roll. Just 17 months ago, daddy Jahred helped deliver his daughter who was born looking “blue” and was quickly whisked away by the nurses. As first time parents, they didn’t know what to expect, but they knew it wasn’t this.

Jahred watched in fear as the nurses began cleaning the newborn with towels and her skin wiped away, too. Her bottom, face and head had little to no skin. Najah’s tiny hands and feet had blisters and looked like they had been drug through concrete. The nurses also found a cleft. Because of her fragile skin, the new parents did not get to hold her until she was three days old.

Doctors were confounded. They said Najah had congenital anomalies but they couldn’t give a specific diagnosis.

“It was hard to trust people when the experienced professionals had blank expressions,” Jahred said.

After eight days in the hospital, doctors sent the parents home with their delicate child and told them to enjoy the short time they would have with her. Frightened, emotional and with no explanations for her condition, the parents did just that.

In the next weeks, Najah’s skin peeling lessened and her skin very slowly began to heal. Jahred and Natalie spent the first months of her life learning to care for her skin and to feed her through her G-Tube, visiting doctors in search of a diagnosis and enduring cleft repair surgeries. Najah was hospitalized four times because of her inability to eat or severe ear infections. After three months, a visit to a geneticist provided the answer: Najah was affected by Rapp Hodgkin syndrome, a rare genetic disorder.

Jahred and Natalie quickly discovered the National Foundation for Ectodermal Dysplasias through an internet search and learned that Rapp Hodgkin syndrome was one of the ectodermal dysplasias. Natalie says how grateful she was to receive the NFED’s packets of information and then attend a National Family Conference. At the conference, Natalie says they were walking into the hotel when she spotted a little girl sitting on a bench with a box.

“I didn’t even see her face, just her head. It looked like Najah’s. Her features were so distinctive I immediately thought, ‘We’re not alone. There are people who are just like Najah,’” Natalie said. “We felt at home at the conference. Since Najah was born, people knew our experience and family and friends were supportive. But at the conference, was the first time people had empathy and not sympathy because they understood and had lived our experience.”

Just a few short months later, the Carlise family was elated to participate in a special symposium the NFED sponsored on AEC syndrome (which is considered closely related to Rapp Hodgkin syndrome) and skin erosion. They participated in the various research projects and grand rounds to educate local dermatologists. They were especially excited to meet another African American family with a baby girl who was affected like Najah and had similar white patches on her face and head because of a lack of pigmentation due to the skin erosion. They felt a connection.

Today, Najah has a hearing aid and is finding her voice. She has developed seven teeth and has one more on the way. The Carlise’s days are full with taking Najah to weekly speech and feeding therapy, doctors’ visits, thrice daily skin treatments, Jahred working and attending school full time and Natalie attending nursing school. They continue to educate doctors, friends and even curious strangers about Najah’s rare condition. Yet, the Carlises wouldn’t trade their life for anything.

“We know that Najah will always have the innate ability and resources to overcome any obstacles. We keep steady on the path. We are rooted in our spirit and have support from the NFED and God. She’s our daughter!”

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