Ichthyosis Awareness Month: Kitty, Addison and Joella's story ~ "I like to think that people stare because they are struck by such beauty."

When Kitty sent me her story for the Ichthyosis Awareness Month blog project, she also sent me 40 pictures of Addison and Joella, her gorgeous granddaughters, because she was unable to choose just a few. And then I had trouble choosing! The happiness Addison and Joella show makes me so happy too.

The pride that Kitty has for her granddaughters is so wonderful, and it makes me very reflective of the relationship I had with my own grandparents.

Kitty has been a wonderful supporter of this blog project, and I thank her for sharing this story and these beautiful, beautiful pictures.

(Addison, Kitty and Joella)

 

"Let Me Show You A Picture of My Grandchildren.

Do you shudder when you hear that from an old gal with whom you were in high school thirty years ago? I must admit, I do - well, I did, but not any more. Why? Because I want to show pictures of my own beautiful granddaughters. I am so proud of them!

I wasn't hankering for grandchildren before they were born. But I fell so deeply in love with them when they entered our lives. They bring such joy and delight to us. I am so thankful and blessed to be their Mawmie.

I could write volumes about them, like how dramatic JoElla is, how she eats her peanut butter and jelly with a spoon instead of on bread and what a quick temper she has, how you could get lost in her beautiful blue eyes. I could tell you about Addison's love for all things princess, how she communicates in giggles and loves cinnamon toast and that every woman on the planet would pay good money to have hair as beautiful as hers. But it's ichthyosis awareness month, so I'll just give you a little information about that and let the photos show you that they are beautiful, normal, healthy, happy, loved little girls.

Our older granddaughter, Addison, is six years old. She is in 5K (five-year kindergarten). JoElla is our younger granddaughter; she is two and a half. She stays at Mawmie Day Care (translates to: she stays with me) while her mama and daddy are at work. They have Erythrokeratoderma Variablis type ichthyosis which they inherited from their daddy, our wonderful stun-in-law, Trey.

When they were born, their skin appeared to be normal but the ichthyosis manifested within about five weeks. Like most people who have ichthyosis, they cannot sweat and over-heat easily. They are both generally healthy. Addison has severe dry eye but this is managed with medical treatment.

Every good grandmother loves her little darlings with such fierceness, with such fire and passion and we know when someone is staring at our grandchildren. I like to think that people stare because they are struck by such beauty. But I know that Addison's and JoElla's appearance can be shocking. So when I notice the stares, I open the subject about their skin and give them an awareness card that can be handed to the curious when questions are asked (these can be obtained from F.I.R.S.T.).

If I notice children being rude, I hunt down their parents (yes, like a granny lioness protecting her grandcubs) and mention that I noticed their child was curious about my granddaughters' skin and give them the awareness card.

I believe that education is the key to making Addison's and JoElla's future brighter. Please visit the F.I.R.S.T. site to learn more about erythrokeratoderma variablis and the other types of ichthyosis. While you're there, please consider making a donation to further research on ichthyosis."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.