Georgia’s Fund

We are the Prebianca family - Connor, Sarah, Camilla and Georgia. Our youngest daughter suffers from a rare and devastating disease called Lesch-Nyhan Disease (LND). It is a very rare and severe genetic disorder that usually manifests in extremely low muscle tone, high uric acid in the blood, neurological implications, and involuntary brutal self injury behaviour. LND is a result of genetic code defect of the HPRT gene and represents itself usually in males at a rate 1 of 350,000 males and even less in females, about 12-20 documented cases in the world.

We are trying to do everything in our power to ensure Georgie’s highest mobility and quality of life.

Georgie has two private physiotherapists, a private speech therapist, an Osteo and, hopefully, a private occupational therapist.

She has a naturopathic dr who monitors her levels and makes supplement recommendations.

We try to engage her the best we can with new toys and equipment to encourage her gross and fine motor skills.

With Georgie’s low tone, array of prescriptions and G tube, we need a nurse or PSW to watch her while the parents go for respite.

We are going to renovate our garage into a main floor bedroom and bathroom so Georgia can eventually wheel herself around independently and we can reduce the strain on our bodies. 

Everything given will go directly to help Georgie’s everyday life and safety.