...and we'll live every moment now until when she goes...

September 27, 2021 | 40m 24s

This storyteller shares the joys and challenges of being a parent to a child with congenital myotonic dystrophy; the work of being a parent advocate and the honor of loving a child.

Story Transcript

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STORYTELLER ATTRIBUTES
50 - 59
Female
More than a college degree
White
9xxxx
Patient
STORY TYPE
Blood, Heart and Circulation; Bones, Joints and Muscles; Brain and Nerves; Digestive System; Endocrine System; Immune System; Kidneys and Urinary System; Lungs and Breathing
Brain and Nerves; Genetics/Birth Defects; Infections, Injuries and Wounds; Having multiple health conditions at the same time
Experiencing symptoms; Finding out a diagnosis; Being treated; Communicating with doctors and nurses; Supporting family members who are sick; Making decisions about the right health care and support for your child
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