Ethan is a very active and bright 6 year old boy. He also has Autosomal Recessive Congenital Ichthyosis ARCI. His skin routines take time, but they blend into our normality and are not intrusive. The biggest hurdle is overheating. He overheats extremely easily and that causes him frustration. We use a cooling vest and mister, but that only helps so much. That being said, he plays outside daily. Ethan also helps on our small farm. He has chores to do, just like his sister. It has to be pretty hot to get out of his chores, even then we encourage him to get completely wet where he can still help take care of his chickens. In addition to his animals and playing outside, Ethan loves to read, socialize, and ride elevators. He handles questions about his ichthyosis with poise and ease that I, as an adult, sometimes struggle with. He is matter-of-fact and kind in his replies to comments in public. In turn, he creates awareness and compassion in those concerned about his condition.
We found out about FIRST hours after Ethan was born. My father suspected ichthyosis of some sort, so we were on the computer researching while we were waiting for the dermatologist on call at Wake Forest to see him in the NICU. Our internet search found FIRST's information. FIRST helped support us from that first day. We've heard other horror stories about what parents have been told. We were so lucky to have physicians familiar with FIRST and the condition. That made a world of difference. Attending FIRST’s family conferences has been very helpful for us. We found many new ideas and friendships. The support continues in those relationships forged at the conferences.
Ethan tells me that the thing he likes best about himself is his brain because he can think really well. He loves to play outside on his swingset and try to catch chickens and goats on the farm. If there were one thing he could change about himself it would be sweating. “I want to, that way I could stay outside a lot longer. It makes me feel bad that I can’t sweat.”
Ethan says that the best part about having ichthyosis is that he likes staying the bath a long time. It makes him feel good.
Asking Ethan what makes him special, he says “Having ichthyosis and having a mommy. There are some people that don’t have a mommy or ichthyosis.” He says that he’s glad that he has ichthyosis because he can talk to people easier. “I like myself more.”
Ethan believes that it is important for people to know about ichthyosis. That way there will be more money for FIRST. "It's important for FIRST to have money to spend it to help people with ichthyosis."
Erin (Ethan's mom)
Thomasville, North Carolina