Tell Us Your Story

Are you a Super Parent or caregiver of a child with a special health care need (CSHCN)? Join dozens of other families who’ve reached out to us to tell their stories, through words, photos and “care maps,” of what it’s like to care for CSHCN on a daily basis. Many manage appointments with specialists scattered across different hospitals. Others spend hours upon hours negotiating reimbursements for services and equipment. And for so many families, life is often about driving long distances to reach those services. Tell us your story, connect to other families, and help us improve the system of care for CSHCN in America’s most populous state.

In the form on the right, we ask you for a “care map,” which is a powerful way for parents of CSHCN to visually illustrate the complicated web of medical care and coverage, as well as educational and support services needed for their children and their family. Read “Gabe’s Care Map” for more information, and to see an example

All fields with an asterisk are required and will be displayed when we include your story on our web site. Your email address will not be shared, nor will any of the information you provide in the non-required sections of this form.

Name *

Email *

City *

State *

Your child's name *

Your child's condition(s) *

Your child's age

Your child's gender

Your child's race/ethnicity

Phone number

How did you hear about this project?

Tell us your "Day in the Life" story *

What is a typical "day in the life" of caring for your child? Does a bus pick up your child for school? Does your child see multiple specialists and educators? Do you have to travel long distances to get to appointments? What is medical care or treatment like at home? Is your child involved in activities? Regarding the health care system, what changes would make it easier for you to care for your child?

Please upload a recent family photo *

Files must be less than 2 MB.
Allowed file types: gif jpg jpeg png.

Comments or questions about the project?

Please upload a care map

Care maps are a powerful way for parents of CSHCN to visually show the complicated web of support services needed for their children and their family.
Files must be less than 2 MB.
Allowed file types: gif jpg jpeg png.

Permission *

I acknowledge and hereby grant to the Lucile Packard Foundation for Children’s Health the worldwide and perpetual right and authority to use, reproduce, distribute, broadcast or otherwise transmit, publish and/or display in whole or in part, my name, photograph, any other likeness and/or biographical information I have provided and, if applicable, the Minor(s)’ name, photograph, any other likeness and/or biographical information I have provided in any and all media now known or hereafter invented, in perpetuity, for purposes including but not limited to trade, promotion, publicity, and/or web content without notification, compensation, royalty or additional consideration, except where prohibited by law.

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