Sienna Grace Kite

Sienna Grace was born at 37 weeks gestation with Orofaciodigital Syndrome Type 1. Undiagnosed in pregnancy, her multiple medical conditions only became apparent shortly after birth when she was rushed to NICU. OFDS1 affects approximately 1 in 250,000 girls worldwide, and is fatal for boys. As far as we know she is the only girl in New Zealand with it. Now aged 15 months, Sienna has undergone two operations, one at 5 months old and another at 9 months old with more ahead once she is bigger and stronger. She spent the first 13 months of her life sleeping with a cardio-respitory monitor. Between Southland Hospital and Dunedin Hospital Sienna is under the care of multiple surgeons, specialists, doctors and therapists. We are now waiting on a scan of her kidneys as she is at risk of developing Polycystic Kidney Disease and may go into renal failure, resulting in a transplant. The cost of travel, accommodation, medication and rehabilitation/therapy has run into the thousands to date. Any donations received to help with Sienna's medical expenses and care would be greatly appreciated by her family.