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Neighbors Growing Together | Oct 24, 2014

Mother, daughter honorees of Arthritis Walk

Apr 24, 2013
Photo by: VICKI TILLIS/Ledger photo Savannah Fleeman, left, cast as one of Ariel’s mermaid sisters in Fairfield Middle School’s recent production of “The Disney’s Little Mermaid,” sings in a scene. Fleeman, who has Ehlers-Danlos Syndrome, has developed a love of reading, writing, singing and drama. She and her mother Amy Robasse, who also has been diagnosed with EDS, are the dual honorees of the 2013 Arthritis Walk May 4 in Cedar Rapids.

A mother and daughter of Fairfield, Amy Robasse and Savannah Fleeman, are the dual honorees of the 2013 Arthritis Walk set for 8 a.m. May 4 at Veteran’s Memorial Stadium in Cedar Rapids.

Robasse and Fleeman have both been diagnosed with 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,” Robasse 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.”

Listed among its symptoms are joint hypermobility, loose joints prone to dislocation, movement beyond their natural range and pain and fragile skin that tears and bruises easily.

Fleeman was diagnosed with EDS in 2005.

“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,” Robasse said. Agency’s

After meeting with the Area Education Agency’s occupational therapist and her doctor, the little girl was referred to a connective tissue specialist for diagnosis and the Pediatric Genetics Clinic at the University of Iowa Hospitals and Clinics in Iowa City.

Robasse had been forewarned she almost certainly had EDS, but concerned that an official diagnosis would label her with a pre-existing condition if she ever lost her healthcare insurance, she put off visiting a geneticist until her knee pain became severe in 2010.

One of the first things Robasse did after the diagnosis was visit an occupational therapy department for ring splints — splints around the top joints of her fingers, which help provide stability to her fingers so it reduces pain in her hands and prevents her fingers from fatiguing so quickly.

Fleeman has worn ring splints since 2005. Her first set were plastic, but then she got a silver set dolled up by Dania De Bortoli, a Fairfield jewelry designer and friend of Robasse’s, who added pink and purple beads to the bracelets holding the thumb splints in place.

Robasse said her daughter’s fingers basically flipped straight back making pinching to pick things up difficult for her. She said the ring splints were a godsend, and because they did help make the biggest difference, Fleeman wanted to wear them.

Because Fleeman was diagnosed at just 5 years of age, steps have been taken to help preserve her body for the future — no gymnastics, no contact sports.

Instead the energetic pre-teen has developed a love of reading, writing, singing and drama — she recently played one of Ariel’s mermaid sisters in the Fairfield Middle School’s production of “Disney’s The Little Mermaid” — and she has become a passionate advocate who teaches others about EDS.

Robasse, who was a para-educator with special-needs children, knew the diagnosis meant a career change. After consulting with her doctors and doing some research, she decided to go back to college and earn a degree in something that would allow her to move on in her career despite having EDS. With the help of Iowa Vocational Rehabilitation, she is halfway toward meeting that goal.

This year’s Arthritis Walk, the signature fundraising event for the Arthritis Foundation, is the fifth one for Robasse and Fleeman.

Participants have a goal to raise $30,500 at this year’s walk. For information or to donate, visit the website www.kintera.org/faf/home/default.asp?ievent=1050663.

 

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