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updated: 11/3/2013 8:00 AM

Images: Girl Endures Extremely Rare Skin Disorder

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  • Stepping off the bus after a day of school, Caroline Provost, 8, is greeted by her dad, Pete Provost, outside their Palatine home.

       Stepping off the bus after a day of school, Caroline Provost, 8, is greeted by her dad, Pete Provost, outside their Palatine home.
    JOE LEWNARD | Staff Photographer

  • Because of a disorder that leaves her skin as delicate as a butterfly's wing, Caroline Provost, 8, of Palatine, gets help from her dad, Pete Provost, as she gently removes her jacket after riding the school bus home.

       Because of a disorder that leaves her skin as delicate as a butterfly's wing, Caroline Provost, 8, of Palatine, gets help from her dad, Pete Provost, as she gently removes her jacket after riding the school bus home.
    JOE LEWNARD | Staff Photographer

  • Seeing how high she can go on the swings at Kimball Hill School in Rolling Meadows, Caroline Provost soars under the watchful eye of her protective aide, Michelle Whiteside. The girl's skin is so fragile that she needs padded mittens to keep the chains from blistering her hands.

       Seeing how high she can go on the swings at Kimball Hill School in Rolling Meadows, Caroline Provost soars under the watchful eye of her protective aide, Michelle Whiteside. The girl's skin is so fragile that she needs padded mittens to keep the chains from blistering her hands.
    JOE LEWNARD | Staff Photographer

  • Caroline Provost's name on her desk at Kimball Hill School in Rolling Meadows.

       Caroline Provost's name on her desk at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • An avid reader, 2nd-grader Caroline Provost starts a book by herself while waiting for friends at Kimball Hill School in Rolling Meadows.

       An avid reader, 2nd-grader Caroline Provost starts a book by herself while waiting for friends at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • Trying to resist the temptation to scratch the constantly itchy blisters on her arm, Caroline Provost, 8, watches her mom, Adrienne Provost, gently remove the protective bandages the girl wears day and night. Changing the wrappings every day is a painful two-hour ordeal.

       Trying to resist the temptation to scratch the constantly itchy blisters on her arm, Caroline Provost, 8, watches her mom, Adrienne Provost, gently remove the protective bandages the girl wears day and night. Changing the wrappings every day is a painful two-hour ordeal.
    JOE LEWNARD | Staff Photographer

  • Caroline, her arms wrapped in protective bandages, shares a moment with her mom, Adrienne Provost, before a snack after school.

       Caroline, her arms wrapped in protective bandages, shares a moment with her mom, Adrienne Provost, before a snack after school.
    JOE LEWNARD | Staff Photographer

  • Having developed a true friendship during their three years together, Caroline Provost, 8, talks with Michelle Whiteside, her one-on-one program assistant, as lunch begins at Kimball Hill School in Rolling Meadows.

       Having developed a true friendship during their three years together, Caroline Provost, 8, talks with Michelle Whiteside, her one-on-one program assistant, as lunch begins at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • A newborn at the hospital eight years ago, Caroline Provost's delicate skin is wrapped in bandages.

      A newborn at the hospital eight years ago, Caroline Provost's delicate skin is wrapped in bandages.
    Photo courtesy the Provost family.

  • Caroline Provost gets ready for recess with the help of her personal aide Michelle Whiteside at Kimball Hill School in Rolling Meadows.

       Caroline Provost gets ready for recess with the help of her personal aide Michelle Whiteside at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • Fighting the urge to scratch her always itchy skin, Caroline Provost watches as her mom tends to her skin.

       Fighting the urge to scratch her always itchy skin, Caroline Provost watches as her mom tends to her skin.
    JOE LEWNARD | Staff Photographer

  • The book "Everyone Belongs" tells of a child living with epidermolysis bullosa, a disorder that makes skin extremely fragile.

       The book "Everyone Belongs" tells of a child living with epidermolysis bullosa, a disorder that makes skin extremely fragile.
    JOE LEWNARD | Staff Photographer

  • As Caroline Provost twists on a fun piece of playground equipment at recess, aide Michelle Whiteside gently grabs her coat. Because of a rare genetic disorder, even a mild bump can blister and tear the girl's skin.

       As Caroline Provost twists on a fun piece of playground equipment at recess, aide Michelle Whiteside gently grabs her coat. Because of a rare genetic disorder, even a mild bump can blister and tear the girl's skin.
    JOE LEWNARD | Staff Photographer

  • Second-grader Caroline Provost reads with friend Cece Gary at Kimball Hill School in Rolling Meadows.

       Second-grader Caroline Provost reads with friend Cece Gary at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • Caroline Provost gets ready for lunch with the help of one-on-one program assistant Michelle Whiteside at Kimball Hill School in Rolling Meadows.

       Caroline Provost gets ready for lunch with the help of one-on-one program assistant Michelle Whiteside at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • Before lunch, Caroline Provost chats with some of her BFFs at Kimball Hill School in Rolling Meadows.

       Before lunch, Caroline Provost chats with some of her BFFs at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • Caroline Provost picks out a book with friend Cece Gray at Kimball Hill School in Rolling Meadows.

       Caroline Provost picks out a book with friend Cece Gray at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • Blue eyes and a sweet smile dominate the face of Caroline Provost, who doesn't let painful blisters from a rare skin disorder keep her from enjoying lunch at Kimball Hill School in Rolling Meadows.

       Blue eyes and a sweet smile dominate the face of Caroline Provost, who doesn't let painful blisters from a rare skin disorder keep her from enjoying lunch at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • The grace shown by their daughter and others dealing with a rare skin disorder "is humbling," says Adrienne Provost as she and Peter Provost talk with Caroline about her school day.

       The grace shown by their daughter and others dealing with a rare skin disorder "is humbling," says Adrienne Provost as she and Peter Provost talk with Caroline about her school day.
    JOE LEWNARD | Staff Photographer

  • Talking as only good friends can do, Caroline Provost, left, has lunch with friend Cece Gray at Kimball Hill School in Rolling Meadows.

       Talking as only good friends can do, Caroline Provost, left, has lunch with friend Cece Gray at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • This scrapbook helps parents Adrienne and Pete Provost of Palatine keep track of the struggles, joys and advocacy surrounding their daughter, Caroline, who is known as one of the "Butterfly Children" because her skin is as delicate as a butterfly's wing.

       This scrapbook helps parents Adrienne and Pete Provost of Palatine keep track of the struggles, joys and advocacy surrounding their daughter, Caroline, who is known as one of the "Butterfly Children" because her skin is as delicate as a butterfly's wing.
    JOE LEWNARD | Staff Photographer

  • Deciding to hit the swings first, Caroline Provost, center, chats with friend Cece Gray and one-on-one program assistant Michelle Whiteside at Kimball Hill School in Rolling Meadows.

       Deciding to hit the swings first, Caroline Provost, center, chats with friend Cece Gray and one-on-one program assistant Michelle Whiteside at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

  • Because of his daughter's rare genetic disorder, Pete Provosts uses the lightest touch to help his daughter remove her coat without blistering her delicate skin.

       Because of his daughter's rare genetic disorder, Pete Provosts uses the lightest touch to help his daughter remove her coat without blistering her delicate skin.
    JOE LEWNARD | Staff Photographer

  • Changing the dressing on Caroline Provost's arms, legs and torso general takes about two hours each night. Trying not to scratch, the girl suffers from the painful blisters.

       Changing the dressing on Caroline Provost's arms, legs and torso general takes about two hours each night. Trying not to scratch, the girl suffers from the painful blisters.
    JOE LEWNARD | Staff Photographer

  • Adrienne Provost lances blisters on the skin of her daughter Caroline, while the girl busies herself with the game "Minecraft."

       Adrienne Provost lances blisters on the skin of her daughter Caroline, while the girl busies herself with the game "Minecraft."
    JOE LEWNARD | Staff Photographer

  • Caroline Provost, left, has lunch with friend Cece Gray at Kimball Hill School in Rolling Meadows.

       Caroline Provost, left, has lunch with friend Cece Gray at Kimball Hill School in Rolling Meadows.
    JOE LEWNARD | Staff Photographer

 

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