Remi vs Rett

Our daughter Remi is a bright, giggly two-year-old who loves The Wiggles, music, and being around people. But behind her smile is a rare and devastating condition — Rett Syndrome — a neurological disorder that’s stolen her ability to walk, talk, and use her hands. It’s like having the symptoms of autism, cerebral palsy, Parkinson’s disease, anxiety, and epilepsy all in one little body.

Remi has shown us she can improve. After attending intensive therapy sessions in Australia, she reached milestones we never thought possible - sitting on her own, reaching out to stop herself from falling, beginning to put weight through her legs.

But each three-week block costs up to $10,000, and without consistent therapy, all of her progress risks being lost.

Thankfully, a new clinic is opening in Rotorua this July, giving us local access to the therapy she needs. But the sessions aren’t funded in NZ, and costs continue to mount — therapy, equipment, home modifications, travel.

To raise funds and awareness, Matt (Remi’s dad) will be playing 24 hours of indoor golf on May 23, joined by friends and special guests.

Thank you so much for supporting Remi’s journey.