Ichthyosis Awareness Month: Kallie's story ~ happy fourth birthday for today!

When I put out some teaser pictures for my Ichthyosis Awareness Month blog project on Instagram, a woman named Kati contacted me asking me if she could borrow the fish picture for her daughter. I wrote back asking her if she wanted to get involved. Kati has a little girl with Ichthyosis - her name is Kallie and she turns four years old today! Kati and Kallie live in Alabama, USA. Kallie has a combination of Lamellar Ichthyosis on her face, arms and legs. and Congenital Ichthyosis form Erythroderma (CIE) on her chest and back. My heart melted when Kati sent through some pictures - the cuteness! Kati asked her Mum - Kallie's Grandmother Jane - to write this piece. Happiest of birthdays Kallie :)

"Kallie is more comfortable in her skin than most adults I know. On May 26, 2013 she will be 4 years old, and according to Kallie...will never be 3 again. Difficult to argue that point.

Kallie is a happy, healthy little girl with a smile that will melt your heart. Her beautiful brown eyes and her perfect little nose will have you at first sight. She is sometimes shy and sometimes she commands the attention of a crowd, with a personality that will charm you out of the shirt off your back. She has a kind spirit that warms your soul.

It occurred to me very early on, as I held this precious gift from God, and looked into her eyes, that Kallie looks at the world through her eyes and she sees you for who you are. Each of us should take lessons from her. Yes, Ichthyosis by definition is rare skin disorder, but to Kallie it is just her skin. Kallie is far more rare than any of the rest of us can ever hope to be. She is truly a blessing to our family. I could not imagine how life would be without this rare little girl. She is full of life and imagines the world as a wonderful place to explore and learn. She runs, skips and jumps just like all other children. She loves with wild abandon with no restraints.

Children are far more receptive of Kallie than some adults that seem to let their curiosity get the best of them and ask questions as if they think she can not hear them. It is these moments that anger me. How many of us rush to judgements of others with what we see, not who we see? Hopefully, Ichthyosis will be a platform for Kallie to make a difference in the way we react to others and will teach us to celebrate the differences of others.

Ichthyosis is a word I didn't no existed before this little girl was given to us almost four years ago. There have been trials, tears, fears and stresses, and plenty of bumps in the road. Through this, Kallie has thrived and grown and continues to amaze me with her many accomplishments. She is smart and has a vocabulary that will challenge many adults. She conducts conversation that will have you searching for words to keep up with her imagination. She loves to sing and perform and is always available with her super powers to rid the world of the bad guys.

Honestly , I still know very little about the skin disorder, but I know without a doubt that Kallie is a special little girl that will make a difference in this world. She holds a place in my heart that couldn't be filled by anyone but Kallie, Ichthyosis and all. She has loving parents, the very best older sister, Kennedy Jane (pictured below), a fabulous Aunt Ali and Uncle Ryan and each of us argue over who Kallie loves the most. Kallie just smiles and handles all this love as if this is just an ordinary day. She certainly suffers no shortage of people that adore her.

None of us would choose Ichthyosis, but each of us would choose Kallie. She is a rare gift from God and we love her just like she is. With each new lotion or cream or shampoo, lies the hope that one will relieve the discomfort of Ichthyosis. Kallie is very tolerant of the entire process and knows what each lotion or cream is called and which goes on first and last. For her, that is normal.

I would challenge each of you to take a moment to learn something about itchysosis. May is Ichthyosis month. May happens to be Kallie's birthday month. Just another excuse to have a party

To all the families that struggle with Ichthyosis, I send you my best wishes and love and hope all these extraordinary children have the very best life has to offer. That each and every one of these precious lives reach their full potential and become the best they can be. May God Bless you and your family with love and happiness."

 

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.