A Strong Spirit
We adopted our 26 year old daughter, Katie, when she was 14 months old with full knowledge that she had been diagnosed with moderate lamellar ichthyosis.

In the short period of time before Katie came home, we were able to obtain a bit of medical knowledge, but certainly not enough to completely educate us. I guess that is what you call 'hitting the ground running'.

Our first visit to our dermatologist told us that Katie may not have much more hair than she did at that time (which was very little!), she would most likely have very poor teeth, be prone to infections, and would have to limit her physical activity due to her not being able to sweat. Bill and I looked at each other, shrugged our shoulders, said we would buy her a wig, possibly dentures when needed, and went home.

From the very beginning Katie showed a spirit that we knew would be both challenging and empowering. Little did we know it was only the beginning. People would stare and make rude comments - we stared back, comment back, and taught Katie how to stick our her tongue at a very early age!  We told her every single day (usually in the morning when her skin was the driest and her hair was standing on end) how beautiful she was and if people did not like what they saw it was their problem.  We also tried to educate people, when we thought they were capable of being educated.

Katie started dancing lessons at 3 years old. She continued to dance, taking as many as nine classes a week until she was 12 years old. She was chosen to be on her dance schools competition dance team and earned gold and silver trophies. She played basketball, field hockey and was the ONLY girl on the all boys high school lacrosse team. Mind you she is all of 5 feet tall and 110 lbs! Academically, Katie excelled. She took French from 3rd grade through graduation and earned a spot on the National French Honor Society. She graduated from high school and took a year off to decide what she wanted to do in her future. Her love of animals started her in the direction of becoming a veterinarian, but her heart told her that she could not pursue that field.

Today, Katie is a college student (on the dean's list). She will graduate next spring with a Bachelor's in Physical Education and Exercise Science and wants to be a physical therapist. She works at a kennel, where she is able to still pursue her love of animals. She is a member of the Connecticut Roller Girls, which is one of three roller derby teams in the state. Their team won the 2007 Championship and Katie was voted MVP and High Scorer for the season. She was also recently elected captain of their newly formed travel roller derby team and we cannot be prouder of her.

Yes, Katie gets overheated, but she knows her limits. She knows how to cool down quickly and takes the best possible care of her health. My only recommendation is never limit your child. We always let Katie do anything she wanted. If she couldn't do it, she knew that long before any of us did. If there is anyone you know with a newly diagnosed child or perhaps someone who has fears of the unknown, please give them my name and ask them to contact me. I would be more than happy to share our story with anyone.

Sincerely, J. B.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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