06 May 2015

Ichthyosis Awareness Month - say hello to Addison and Joella again!

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. 

"My husband Trey just turned 35 in March( he’s an old man ;), Addison was 8 in January, and JoElla is 4 and a half. 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 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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  1. Such a beautiful family! "It's my special skin"... how gorgeous is that. :-)

  2. Beautiful brave family :-) thank you for sharing. x


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