Just diagnosed? Start here
Take a breath. An FHS diagnosis can feel isolating because so few people have heard of it. Here’s what many families do first:
- Meet with a genetic counselor to understand the test result and what it means for your family.
- Schedule baseline checks: hearing, vision, a kidney ultrasound, a heart evaluation, growth, and dental. See About FHS.
- Start speech and communication support early, including AAC if speech is slow to come.
- Ask your school district for an assessment in writing. Our advocacy guide walks you through it.
- Find your people. Connecting with another FHS family is often the most helpful thing of all.
Connect with us
Floating Harbor wants every FHS family to have someone to call. Tell us about your child, where you are, and what you need right now. Heather will personally reply.
Need financial help?
Our Family Assistance Fund helps families with costs that insurance and schools don’t cover, like alternative schooling, tutoring, therapies, and equipment. Learn about the fund.
Trusted resources
Medical information
- GeneReviews: Floating-Harbor Syndrome
- MedlinePlus Genetics
- NORD: National Organization for Rare Disorders
- Find a genetic counselor (NSGC)
Education and rights
- Parent Center Hub, to find your state’s free Parent Training and Information Center
- Wrightslaw, special-education law and advocacy
- Disability Rights California
- Understood.org
Communication
San Diego
- San Diego Regional Center, California developmental services
- Exceptional Family Resource Center, San Diego’s family resource and parent center
- Special Olympics Southern California, San Diego