Revie’s Rule:

Every Child Deserves A Plan

Revie Jay is our 3 year old daughter who has a full roster of complexities. Her 4 main disorders she’s battling is 4Q Syndrome, Refractory Epilepsy, Chorea, and FEVR. In other words, Revie is 1 of 1.

Being thrown into this medical world has shown us that the system is not built for medically complex kids.

Revie’s Rule is a nonprofit organization dedicated to advocating for the rights and well-being of special needs children and their families in medical settings.

Who
are we?

OUR MISSION:

To bridge the gap between healthcare providers and parents, ensuring that families’ voices are heard and medical teams are aligned in delivering the highest quality care.

Services

Family Advocacy + Care

  • 24/7 support during emergencies, unsafe discharges, or care escalations.

  • Available advocates to join appointments, hospital stays, care conferences, etc. to ensure parents have the proper support.

  • Help through medical jargon, records, and treatment plans to make sure parents are properly informed of their child’s plan.

System Accountability & Reform

  • Assistance documenting systemic failure and patterns of neglect. Along with help filing formal complaints with hospitals, insurers, or state agencies.

  • Parent-led accountability boards that push for safer, family-centered protocols.

Medical Doc + Action Plans

  • Kits, sheets, posters, or handouts of your child made visible for care providers to see.

  • Timeline documentation of your child’s care to avoid gaps and keep critical checkpoints clear and organized for care team.

Community Support

  • How to advocate, medical navigation, and preventing gaslighting. While building community with families walking similar journeys.

  • Parent-led support groups both online and in-person.

Featured Family Support

  • Each month The Revie Jay Shop features a family to tell their story to help spread awareness. The family featured also gets a custom shirt to help raise funds for the 30 days their shirt is featured where 100% of their shirt sales are donated to the family.

  • Along with 100% of shirt sales, the featured family will also get Venmo donations from friends and family who decide to support outside of shirt sales. The Revie Jay Venmo will provide 100% of all donations for the 30 days featured.

Policy, Education & Training

  • Partnering with medical and nursing schools to integrate the Family Voice

  • Hosting webinars, summits, and events to share best practices.

    “Every Child Deserves A Plan”

  • Training for hospitals, doctors, and legislators on parent-driven care.

Contact Us

Leave us a message about your needs so we can get in contact with you.