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Bailey
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Bailey is
affected with ARCI-lamellar type ichthyosis and
admits it wasn’t easy growing up being 'different'. At school,
sometimes parents wanted their kids taken out of her classes and some kids
wouldn’t play with her or even touch the things she touched. As a child
she was hurtfully called 'Scaly Bailey'. All of the taunting produced a young
girl that was very insecure and extremely shy. However, with the support of her
faith and family, over time, she came to realize that she is beautiful just the
way she is.
“My heart breaks for all the lies that children are being taught through the media about beauty. That is why I’m continually trying to teach any girl in my life that she is beautiful just the way she is. I am grateful for all the lessons I’ve learned living in my skin. And I’m also grateful for FIRST. They have taught my family everything we know about my ichthyosis. Growing up in a small town, doctors didn’t know what was wrong with me. I was actually life-flighted to another town at birth but they couldn’t really give more details about my condition to my mom. It was at a FIRST conference in Indianapolis where I finally met someone else with the same skin as me. I am so grateful to everyone involved with Dane's concert for supporting FIRST!”
“My heart breaks for all the lies that children are being taught through the media about beauty. That is why I’m continually trying to teach any girl in my life that she is beautiful just the way she is. I am grateful for all the lessons I’ve learned living in my skin. And I’m also grateful for FIRST. They have taught my family everything we know about my ichthyosis. Growing up in a small town, doctors didn’t know what was wrong with me. I was actually life-flighted to another town at birth but they couldn’t really give more details about my condition to my mom. It was at a FIRST conference in Indianapolis where I finally met someone else with the same skin as me. I am so grateful to everyone involved with Dane's concert for supporting FIRST!”
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Ashlynne
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Ashlynne was born
four weeks early, with a chance of complications, due to her being slightly
premature. After coming out of recovery and seeing the look on the doctors’
faces, her parents knew there was a larger problem than low birth
weight. She was life-flighted out of our hometown hospital to a
larger NICU. She has a form of ichthyosis called ichthyosis en confetti
and requires a long 'bath and lotion routine' each morning and night. The
lotions then need to be applied several times throughout the day. She
also must be careful in the heat, and she is highly prone to skin infections. Her
ichthyosis, in fact, affects everything. It causes stiffness in her
joints due to her skin being tight, which causes her to move stiffly and
slowly. Her hearing is also affected due to the skin build up in her ears. But she is a fighter. Ashlynne's mom says, "She has taught me about compassion, patience, and perserverance. She has taught me more in the past nine years than I could ever teach her. She has made me a better person and a better mom. More than anything, in today's very vain world, she has taught me the meaning of true beauty. And we have built a network of friends and have made vital connections through FIRST. Thank you to the wonderful community in the Bay Area for helping raise awareness for those of us with rare skin disorders!"
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Kenny
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Kenny was born in a small southern New Jersey town in 1970, a time
period when very little was known about his skin condition ARCI-lamellar type ichthyosis, and even less
known about its treatment. His childhood was admittedly not ideal, as he not
only was singled out for his skin condition, but was also the child of
divorce at a very early age. However, to his good fortune, Kenny was surrounded
by the love of a supportive older brother and a mother to whom he gives a
world of credit for his upbringing. He has recently come to terms with
the notion that 'everyone suffers' in one way or another, but still his
ichthyosis can be frustrating as his inability to sweat makes him inclined to
overheat, and is he very aware of his excessive skin shedding in social
settings.
Although Kenny’s degree is in interior design, he feels compelled to help people on a deeper level. As the business supply coordinator for the trauma unit for a local hospital, he has ample opportunity to connect with people in a very deep and meaningful way.
“Thank you to FIRST! I am a proud member of this community, and they have supported me with resources and friendship for many years.”
Although Kenny’s degree is in interior design, he feels compelled to help people on a deeper level. As the business supply coordinator for the trauma unit for a local hospital, he has ample opportunity to connect with people in a very deep and meaningful way.
“Thank you to FIRST! I am a proud member of this community, and they have supported me with resources and friendship for many years.”
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EVAN
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Evan was born 9 weeks premature. He was
diagnosed with Harlequin ichthyosis two days before he was born using
3-D and 4-D ultrasounds. His parents were informed that Evan was either a severe collodion baby or a mild Harlequin, but wouldn’t
know for sure until he was born. He had an amazing team of doctors and nurses
waiting for his delivery with the proper care and received genetic testing
after he was born even though it was almost certain that he had Harlequin. Evan
spent fifty-eight days in the NICU and came home 5 days before his actual due date.
For Evan's parents, it was very overwhelming when he first came home as they were dealing with his intense scaling and severely dry skin. But now, he is a very happy boy and after four years, his personality has blossomed. Evan’s mom says, “We connected with FIRST as soon as Evan was born. It was such a relief to have a resource of information about ichthyosis. It took me a while to connect with other families, since I was so focused on Evan’s care, doctor appointments, and intense therapies. Thanks to FIRST, I have now connected with other families and am so glad that I did. I cannot wait to attend the upcoming conference and spend another weekend with the FIRST community. Thank you to all of the performers for your support. It means the world to us.”
For Evan's parents, it was very overwhelming when he first came home as they were dealing with his intense scaling and severely dry skin. But now, he is a very happy boy and after four years, his personality has blossomed. Evan’s mom says, “We connected with FIRST as soon as Evan was born. It was such a relief to have a resource of information about ichthyosis. It took me a while to connect with other families, since I was so focused on Evan’s care, doctor appointments, and intense therapies. Thanks to FIRST, I have now connected with other families and am so glad that I did. I cannot wait to attend the upcoming conference and spend another weekend with the FIRST community. Thank you to all of the performers for your support. It means the world to us.”
DANE
Dane had a rare form of ichthyosis that was identified this year by Dr. Keith Choate at Yale University. With this discovery, we are hopeful that other families affected by this same condition will have better insights into how to care for the affected anatomy (skin, hair, nails, teeth, and cardiovascular system).
Dane's challenges were gaining weight (as his skin burned 1000s of extra calories per day replacing itself), dealing with persistent itchiness, controlling body temperature as he would easily overheat or get cold due to his poor skin barrier, and fighting skin infections also due to his poor skin barrier
Dane loved Disneyland and his favorite character was Goofy. That is fitting as Dane loved to goof around with his brother and sister. Dane was blessed with an amazing disposition and pain tolerance as he was such a happy little guy.
Thank you to all of the performers, donors, volunteers, and guests for making this event possible!
Dane's challenges were gaining weight (as his skin burned 1000s of extra calories per day replacing itself), dealing with persistent itchiness, controlling body temperature as he would easily overheat or get cold due to his poor skin barrier, and fighting skin infections also due to his poor skin barrier
Dane loved Disneyland and his favorite character was Goofy. That is fitting as Dane loved to goof around with his brother and sister. Dane was blessed with an amazing disposition and pain tolerance as he was such a happy little guy.
Thank you to all of the performers, donors, volunteers, and guests for making this event possible!
