Carly Findlay invited me to write Kallie's story for her blog. The story is below.
Kallie has Ichthyosis, which is an extremely rare skin disorder.
Kallie is an extraordinary little girl living an amazingly ordinary life in the skin she is in. Her biggest concern of the day is what she wants for her birthday and who she wants to be for Halloween. Oh how I wish it could stay that way.
Kallie was 5 years old the end of May, and she is growing in so many ways. She has become quite independent. She likes to be dropped off at carpool and walk to her class with her big sister Kennedy Jane by her side. She is learning and thriving at school, where she is appreciated for who she is. In September, there was a Kallie Day held at her school, by the school counselor Ms. Wallace, who is
dedicated to helping other students and teachers to have a better understanding of Ichthyosis, and
how it affects Kallie.
Kallie has learned to say the word "Ichthyosis" and in her 5 year old language she says .."I have scales". Not sure whose word that is, but it works for Kallie. She readily explains that "God made me very special. We don't know anybody that is alive that has skin like me. I am extra extra extra special". And for now that is good enough.
Winter is difficult for Kallie and a real challenge for us to keep her skin moist and comfortable. Kati (mom) is always researching and trying different approaches to keep Kallie as comfortable as possible. Kallie saw a dermatologist recently that prescribed a new treatment plan. The co payment for the cream is $1,100.00. We are trying to come up with a financial game plan to cover the extreme costs. Clearly, something has to be cut out of a monthly budget to cover $1,100.00. We are not rich people by any means, however, we will do our best to purchase the cream and see if it works. Occasionally, Kallie complains, but for the most part she just goes with the skin she is in.
We look forward to summer and the swimming pool and trips to beach. Summer is much kinder to Kallie. She loves to swim and the salt water really helps her skin. A win win!
Kallie received a Tiny Super Hero cape and Kennedy Jane( older sister) has a Tiny Super Hero sidekick cape. They are both very proud. Kennedy Jane is 7 years old and wise far beyond her years. She steps up and protects Kallie and is her very best side kick.
During Mardi Gras Holidays, Kallie...Tiny Super Hero, Kennedy Jane, the best side kick,
Kati ( Mom), and I (Gane) went to Disney world. We had a marvelous time. Those 2 little girls are very brave and fearless. So I put on my still a kid at heart mode and rode endless roller coasters and enjoyed each bump and sharp curve. While Kallie was focused on the next big adventure people were starring at Kallie. For the life of me I can't begin to imagine what is going through a seemingly intelligent adult's mind nor what they are thinking, when they stare at Kallie. I want to say "if you knew how foolish you look you would stop staring at this very animated child who is thrilled beyond words with what ride awaits the very long line. ". Because Kallie is 5 years old, she is not eye to eye with adults so most of the stares go over her head. For me it is very disturbing. As her Gane I want to protect her. But as time goes by, we won't always be there to protect her. So it is my prayer, that in the next few years we can equip Kallie with the strength and aptitude to face those stares with an understanding beyond her years. I trust that Kallie will be comfortable in her skin and the stares will bounce back with a confident smile. I hope Kallie can stand on a platform of acceptance and teach others about people with visible difference and help each of us to be comfortable in the skin we are in.
We all face challenges in accepting our weaknesses and embracing our strengths. Kallie has more than her share. My prayer for Kallie is that she lives her life to the fullest and becomes the very best Kallie. So far she is exceeding my expectations.
Lovingly
Gane
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