Meet Trey, Addison & JoElla
My husband, Trey is 32, my daughters Addison and JoElla are 5 and 20 months, respectively. We knew that Trey had a form of ichthyosis called erythrokeratoderma variablis (EKV) and that each child had a 50% chance of inheriting the condition from him. Both of our sweet girls were born with “normal” skin. Their ichthyosis gradually appeared after about 3 weeks and has only progressed since then. We take our girls to our regular family doctor and he always makes an extra effort to find out new information about the disorder.
Both girls and Trey are in good health. Trey’s biggest battle is his eye, the lower lid has turned out and he has problems with dry eye and extra tearing. Addison fights the usual battle of constipation and hydration. JoElla is a little underweight, I’m guessing because of the extra calories needed to produce so many skin cells, but overall, they are a healthy bunch.
Trey enjoys hunting, fishing, and any excuse to get on his motorcycle. He’s an excellent father, loving husband, and a good man (I might be a little biased). Addison is in 4K this year and her picture can be found beside many terms in the dictionary, including, but not limited to: imaginative, beautiful, princess, personality, actress, hilarious, sweet (again, I may be a little biased). JoElla is an absolute doll. She has a quick temper, but a sweet smile. She hasn’t started walking yet, she chooses to scoot on her bottom instead (cutest thing ever, not biased at all).
Of course, we get lots of questions. Addison has started to answer for herself, she usually replies, “It’s my special skin.”
Since we have 75% of our household covered in Eucerin® and Aquaphor®, we were super excited to learn, last year, that Beiersdorf will send a case for each person every 3 months (thanks to FIRST for the info)! ** Even though my bathroom mirror is covered in Aquaphor® and my light switches are a little greasy, I’m still very thankful!
My girls are just like their sweet daddy: To Know Them Is to Love Them.
Jessica (wife to Trey, mother to Addison and JoElla)
Chesnee, South Carolina
** In order to receive the Aquaphor,® a note from your physician must be faxed to Beiersdorf. Members of FIRST can call the FIRST office at 215.997.9400 for details.