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Both my daughters live with chronic, complex, and rare diseases. They are part of the 11-million children in the United States who live with chronic, and often painful and disabling, health conditions. The experience of living with a chronic illness often results in stress and trauma that put the entire family at risk for poor quality of life, diminished mental and physical well-being, and social isolation. Taking care
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When my first daughter got really sick - I kept looking for the "What to Expect When... " book or web resource for parenting and caring for child with a chronic and life limiting illness . I wanted to know how help my children and family navigate wellness and meaning with disabling life-changing illnesses. I also wanted resources that addressed the specific needs and stressors facing me as a caregiver of children living with chronic illness. I found very little.
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