Patient and Family Resources
We want you to have all the information you and your child need to understand your child’s condition and to participate in treatment. This page provides links to resources that we hope will be helpful.
Resources at Seattle Children’s
- How to prepare for your visit
- Transportation and lodging
- Hospital services
- Paying for care
- Social Work
Condition-Specific Resources
- About Leigh Syndrome (Cure Mito Foundation)
- Facts About Mitochondrial Myopathies (Muscular Dystrophy Association)
- Genetic and Rare Diseases Information Center (National Institutes of Health) – Enter a disease name to find information on many rare diseases in an easy-to-understand format.
For information about how we diagnose and care for children with mitochondrial conditions, see Seattle Children’s Mitochondrial Medicine and Metabolism Clinic.
Tests and Treatments
- Genetics Laboratories
- Ketogenic Diet and Your Child (PDF) (Arabic) (Spanish)
- Percutaneous (through the skin) Liver Biopsy (PDF) (Spanish)
- Magnetic Resonance Imaging (MRI) (PDF) (Spanish)
- Muscle Biopsy (PDF) (Spanish)
- Neuropsychology Evaluation (PDF) (Russian) (Spanish)
- Care After Skin Biopsy (PDF) (Spanish)
Recommended Reading
- Metabolism (KidsHealth) (Spanish)
- Mito 101: A Primer for Physicians and Patients (United Mitochondrial Disease Foundation)
- What Is Mitochondrial Disease? (United Mitochondrial Disease Foundation)
Support Groups and Classes
- The Mitochondrial Research Guild website has resources, events and ways to get involved. A group of patient families started this special-interest guild of Seattle Children’s Hospital to raise awareness, promote research and improve care for children with these disorders.
- Camp Korey
- Outdoors for All
- Parent to Parent (P2P) Support Programs of Washington State (The ARC)
- Sibshops
- United Mitochondrial Disease Foundation Chapters and Groups