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Karen Fennell Strong hasn't added a story.
Kayla was a patient here in Texas at our local children's hospital where after multiple lumbar drains showing her pressures way too high her doctors sent her to Cleveland Clinic in Ohio for her to be diagnosed. We were there for a week and they diagnosed her with Pots Dysautonomia, small fiber neurothopy, thermal dysregulation, focal epilepsy, scotopic, dyslexia. In 2011 the doctors found she needed to have a shunt put in her brain so doctors in Ohio did emergency shunt surgery that saved a majority of her eyesite...now we return every 6 months for follow ups and biopsies because now they found pre cancer cells in the esophagus. She is awaiting double knee surgery to repair damage done by this disease Due to all the traveling I am a stay at home mom and her caretaker our new Obamacare is 1300 a month to keep her insured and her deductible is 6500 but also need help with travel. If you could help we would appreciate it so much. ..her dad works Long hours to keep her insurance paid.
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