...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.

Helped me learn (1)

Made me feel better (1)

Story Transcript

A transcript for this story does not exist. If you're a researcher who is transcribing this story for research purposes, please email the transcription to us.

STORYTELLER ATTRIBUTES

AGE:50 - 59

GENDER:Female

EDUCATION:More than a college degree

RACE/ETHNICITY:White

LOCATION (ZIP Code 1st digit):9xxxx

PERSPECTIVE:Caregiver

STORY TYPE

BODY PART(S):Blood, Heart and Circulation; Bones, Joints and Muscles; Brain and Nerves; Digestive System; Ear, Nose and Throat; Endocrine System; Eyes and Vision; Immune System; Kidneys and Urinary System; Lungs and Breathing; Mouth and Teeth; Skin, Hair and Nails; Female Reproductive System; Mental Health

DISORDER OR CONDITION TYPE:Brain and Nerves; Genetics/Birth Defects; Infections, Injuries and Wounds; Mental Health; Pregnancy and Reproduction; Having multiple health conditions at the same time

TOPIC:Experiencing symptoms; Finding out a diagnosis; Being treated; Getting tests or advice for how to be healthier; Communicating with doctors and nurses; Supporting family members who are sick; Making decisions about the right health care or treatment for you; Making decisions about the right health care and support for your child

Share your health story

Share your own story to help others understand what it is like to live with health problems.

Learn more about sharing your story

Resources

Wondering what it's like to be a patient partner in a clinical study? Here are some links to resources.

Visit our Resources page