Meet Our Families
Here is your opportunity to get to know our truly remarkable families and share their inspiring stories.
FIRST member Katie Smith is more than excited to share her story. After all, it's not just a story about living with ichthyosis. Nor is it simply a story about an "aha" moment, or the journey of a young woman setting out to find her true purpose. To Katie, her life, her skin disorder, her future, are all a part of something bigger, not just a story, but "an obligation to do good in the world." (Read Katie's story.)
In 2014, the Saylor family of Pennsylvania adopted a baby boy affected with harlequin ichthyosis. Their journey from the very first moment they met Daniel, to today, where the happy one-year-old is making strides in his development, has been nothing less than amazing. (Read Daniel's story.)
Kenny was born in a small southern New Jersey town, Glendora, in 1970, a time period when very little was known about his skin condition (ARCI-lamellar type ichthyosis), and even less known about its treatment. His childhood, once depicted in a documentary entitled "Kenny", was admittedly not ideal, as he not only was singled out for his skin condition, but was also the child of divorce at a very early age. (Read Kenny's story)
On any given day, Amy and Andy Coolidge of Frisco, Texas, can be found sprinting from one doctor's visit to the next, while keeping up with life's never-ending demands and "multi-tasking to the max." Yes, they are a married couple in the middle of their lives. Yes, they have jobs, housework, finances, and errands to run. And, yes, they are raising three young children. (Read their story.)
On the second of July 1996, I was born with Netherton syndrome. Doctors had observed and predicted I wouldn't make it past the age of three. They also thought that I would be put on tube feeding for the rest of my life. I'm glad to say... they were wrong.
Now that I look back after sixteen years, (Read Arya's story.)
I was born with ARCI-lamellar ichthyosis 56 years ago in Brooklyn, New York. When I was born there was a gelatinous sac around me which some cultures call a veil [also known as a collodion membrane.] When the sac was broken and removed, the hospital staff saw that my skin was scaly and I was transferred to the intensive care unit. Eventually my parents were allowed to bring me home, although at that time there were no effective treatments for the condition. (Read Vanessa's story.)
When I was about five or six years old, I remember thinking it was a rash appearing on both my legs. "Mom," I said. "What's this?" The "rash" started to get worse and more cracks were appearing. I remember trying to scrub it off while in the bathtub, but whatever this "thing" was, it would not go away. I remember getting frustrated and crying when I realized whatever this was on my legs was not leaving any time soon. (Read Kendra-Ann's story.)