Denise B. - Wantagh, NY - 2024
I found out I was pregnant with my first child and was due March 1997. My husband and I were thrilled, and we made sure we did all the right things and read all the books to ensure that we would have a healthy baby. On March 2nd our baby was born, and we were introduced to the word ichthyosis for the first time.
I remember the day of his birth so vividly, although it was almost 27 years ago. Marc was taken away from me immediately after delivery. I was able to hold him for a quick minute and then they said his skin was red and they wanted to look at him further. I didn’t think anything was wrong. What did I know? This was my first baby and the only other babies I had seen right after delivery were on television.
Marc was born a collodion baby. He was placed in the NICU and he was one of the largest babies in there weighing in at 7 pounds. A nurse took me into the NICU so I could see him. As I was being wheeled through the room, I heard a baby crying at the top of their lungs. I was getting closer to the cries, and I realized it was my baby that was crying. Marc was in an incubator and he looked plastic and shiny. The doctor already told me about ichthyosis before I entered the NICU. He explained about the collodion membrane, but I really didn’t understand. All I kept thinking was that I did not read about any of this in those baby books. Marc was still crying and finally a nurse took him out of the incubator and handed him to me. Once he was in my arms, Marc stopped crying. It then became my mission to find out whatever I could about ichthyosis.
The hospital called in a dermatologist who was familiar with ichthyosis. He looked at Marc and told me that my son had ARCI-lamellar ichthyosis.
I joined FIRST and began talking to other parents who had children with ichthyosis. I attended the FIRST National Conference in Cherry Hill, New Jersey and cried the entire weekend. I was relived to meet others living with ichthyosis and being able to have conversations with them. After that weekend, I knew Marc was going to be okay.
Marc was a very social toddler and did not let ichthyosis stop him. He could be found dancing at family parties, playing with friends at nursery school, and having conversations about Thomas the Tank Engine with anyone who would listen.
Before I knew it, Marc started Kindergarten and in the blink of an eye, he was a high school graduate. The school years were not always easy for Marc, but he managed to get through despite some rough spots. Whenever Marc wasn’t included with his peers, I always wondered if it was because of his skin condition or was it just typical school drama. Being an elementary school teacher, I know how cruel kids can be and I was concerned, but Marc took it all in stride. He joined the Squires at our church and the Nassau County Police Explorers. He was also the manager for the high school varsity basketball team. Marc also became an Auxiliary Police Officer in Nassau County.
When it was time for college, Marc had decided that he wanted a career in law enforcement. (I was not happy with his choice, but I wanted him to be happy) He graduated early so he could enter the police academy for the New York Police Department. The academy was tough, and after the second day, Marc wanted to quit. While I should have been happy with his decision since I was worried about him choosing such a dangerous career, I was not. I told Marc that if he quit, he would be proving to everyone at the Academy that they were correct-he was not cut out for this job. I told Marc to continue, work hard and prove them wrong. Marc did just that and graduated from the Police Academy in December 2019.
In December 2023, Marc was named “Cop of the Month” and he has over 100 arrests. Sure, the job is not easy, and people comment on his appearance, but he pushes through. I am one proud mom!
When I think back on that day in March when I heard the word ichthyosis for the first time, I never imagined Marc would be where he is now. I remember worrying about him overheating, getting made fun of by others, and wondering if he would find someone to spend his life with. I am glad to say that I worried for nothing! Marc is very happy in his professional and personal life, and I know he has a bright future ahead!
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.