Resources
The information we wish we'd had.
Hospitals, support groups, emergency signs, and financial help — all in one place.
Specialist hospitals
- CURE Children's Hospital of Uganda — Mbale (Pediatric Neurology)
- Ccare IHK - Namuwongo — Kampala (Multispecialty Hospital)
- Lurie Children's Hospital — Chicago (neuroendoscopy)
- Muna Therapy Center - Bweyogerere — Kampala (Post Neurosurgery Pediatric Therapy )
Read & understand
- RE Children's Project — researcher-backed family guide
- Epilepsy Foundation — Rasmussen's encephalitis fact sheet
- NIH GARD — Genetic and Rare Diseases Information Center
Support groups
- Rasmussen's Encephalitis Family Support (Facebook)
- Hemi Kids — a global community of hemispherectomy families
- Pediatric Brain Foundation parent network
Emergency signs
- A seizure lasting more than 5 minutes — call emergency services
- Multiple seizures back-to-back with no recovery between
- Loss of consciousness after a seizure that doesn't return in minutes
- Sudden, severe weakness on one side
Financial aid
- GiveDirectly Health — emergency medical grants
- MAGNA / MSF programs in select regions
- NHIF (Kenya) and similar national insurance enrollment help
- Hospital social-work offices — always ask