Back in 2013, I shared Addison and Joella's story - as told by their grandmother Kitty. Today, their mum, Jessica, provides an update. The girls are grown up! It's nice to hear from a mother's perspective. The girls and their father have Erythrokeratoderma Variablis. I love how proud Jessica is of her family.
Meet Jessica and Trey - and say hello to Addison and Joella again.
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 go camping. He’s an excellent father, loving husband, and a good man(I might be a little biased). Addison is in 2nd grade 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(not cool at all), but a sweet smile. She hasn’t started school yet, but we hope she’ll be accepted into the 4K program this August.
Of course, we get lots of questions. Addison answers for herself, she usually replies, “It’s my special skin.” JoElla is a little anxious about starting school because she knows that her skin is different, but we’re working on that with her.
Since we have 75% of our household covered in Eucerin and Aquaphor, we were super excited to learn that Biersdorf 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."
May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here
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