Amy Fleeman's 7-year-old daughter looks like any other healthy child her age, and that, Fleeman said, is part of what makes it hard for others to understand Savannah's Ehlers-Danlos syndrome.      
      "Ehlers-Danlos syndrome is a hereditary connective tissue disorder, and it affects the collagen in your body, so you basically have faulty collagen," Fleeman explained. "That means not only does it affect the skin and the joints, it also can affect your lungs and your stomach, and your GI tract, your heart, basically pretty much anything inside of you."
      The most common form of EDS affects around one in 10,000 to one in 15,000 people, according to MayoClinic.com.
      Savannah was diagnosed at age 5.
      "She was in kindergarten and Sig Moore was her teacher. She noticed that she was having problems with some fine motor skills, and the thing that really set off the alarm was that she couldn't open a water bottle even though the cap wasn't on tight," Fleeman said.
      After meeting with the Area Education Agency's occupational therapist and her doctor, Savannah was referred to a connective tissue specialist for diagnosis.
      Since that time, Savannah has worn ring splints to provide stability for her fingers.
      "Her fingers without them basically flip straight back, so it makes pinching really difficult for her - picking things up," Fleeman said. "They have been a godsend. They make the biggest difference, and she wants to wear them because she knows they help."
      Until this year, Savannah wore 10 plastic splints around the top joints of her fingers. She now has a silver set dolled up by Dania De Bortoli, a jewelry designer and friend of Fleeman's, who added pink and purple beads to the bracelets holding the thumb splints in place.
      But mostly, Fleeman said, "It's all about preserving her body for the future. The more careful we are now, we're hoping the least amount of pain she'll have as she gets older, which is hard because second-graders want to play and be active.
      "It's just a constant struggle. What is OK and what isn't?"
      Can she do a jumping jack in gym class, jump on a friend's trampoline or go to a roller-skating party?
      Those are the questions Fleeman and her husband Jeremy have to ask themselves and answer for teachers and friends.

For the complete article and photos, see the Thursday, June 12, 2008, Fairfield Ledger.