"Lauren's nice, my best friend, fun to play with, mature (sometimes), smart, and caring."

- Elsa, age 8

It was April 17, 2004 and our daughter was about to make her grand entrance.  Clueless is the only word that could be used to describe me and my husband. Bands of nurses and doctors paraded in and out of our room that night, checking monitors, supplies, and preparing the isolette, all while ignoring the two of us entirely. In hindsight, it was clear that something unexpected was happening.

Lauren was delivered without a sound. She was quickly given to a team (I would later find out was from the NICU) and wheeled out of labor and delivery. It took almost a full hour for us to get the news.  ICHTHYOSIS.

Ichthyosis ick-thee-o-sis), four syllables not heard before that early morning. I cannot recall how soon I was actually able to say the word aloud without stumbling over those four syllables. I don’t know when I realized that those four syllables were being used to describe my brand new baby girl and were charting a course for our family that we had not anticipated.

I know now, after 8 years, and since the fog of those early years has lifted, that those four syllables, that word, is firmly established in my vocabulary, used in my every day conversation, and to me is no longer synonymous with terrifying but rather miraculous and community.

I could tell you that Lauren is amazing. I could say that she is smart, talented, and loving. But what would have really brought comfort to the new mom I was in 2004, and still does as the mom I am today, is to hear it instead from her friends. These children that would come to love and protect her, enjoy her company, and seek her out for comfort and companionship. She adores her life and the people in it and I would love to introduce you to just a few of her very special friends.

“Words cannot describe how lucky I feel to have met and loved Lauren. She has ichthyosis but that is not what I see when I look at her. Instead, I see a happy and outgoing child. She is an avid reader. Lauren keeps me on my toes with her curious questions. She doesn’t miss a thing and could run the classroom in my absence. Lauren is very popular and is surrounded by a wonderful group of children who adore her. Lauren welcomes every one of my students daily with a smile and words of encouragement and in return they do the same for her. Lauren is a confident girl who will continue to make a big difference in the lives she touches. I love and admire this beautiful young lady.”  - Mrs. Madsen, 2nd grade teacher

“I am nine and I have known Lauren five years. I see her every day after school and teach her how to play basketball. I think Lauren is a nice and cheerful person!"  - Wes, age 9

“Lauren and I were in the same class for two years and in the same schools for five years. I think Lauren is a very nice girl. She always listens to everyone who talks to her. I see her almost every day after school. And Lauren is very smart and very polite.”  - Andre, age 8

“Lauren will try to do everything that comes her way. She has become more and more independent and I believe Lauren can do anything she puts her mind on. Lauren has many friends and loves them all, as they do her. She is my bright and shining star. My cutie-pie and I am so very proud of her.”  -  Mrs. Hilliker, 1:1 aide Kindergarten-2nd grade

“Lauren is my friend because she's a good friend.  She's nice to me and she likes to give hugs.”  - Freddy, age 8

“I love playing with Lauren” - Amelia, age 7

Thank you to FIRST and to everyone who contributed in this tribute to ichthyosis awareness and to our very special girl.

Shannon and John H. (Lauren’s parents)

What's Your Story? We'd Love to Hear It!




« Back to Meet Our Families

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported 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.

Share This Page: