Help Support Baby Rivers Journey to Health

Our beautiful baby River Kingi is now 7 months old and is the baby of five children to Crystal Gillies. River has a rare condition known as Hypsarythmia or Infantile Spasms combined with Necrotizing Encephalitis.

After several months of being misdiagnosed, countless treatment plans, and painful seizures, Doctors at Waikato Hospital have now identified that River has a rare form of Infantile Spasms.

What began as a temperature, resulted in a brain bleed and seizures. Procedures that she has undergone include and MRI, an EEG, Lumber Puncture, Induced Coma along with the administration of countless numbers of high dose steroids and anti seizure medication. River has been through a war in her short time here on Earth, and her future health as a result, is now undetermined.

Doctors are unable to determine what long term effects the trauma of these seizures have had on her, however the family have been advised to expect the worst. Effects include but are not limited to delayed learning skills, continued seizures, delayed mental development, neurological abnormalities & muscle under development.

In New Zealand, you do not qualify for funded specialized in home care for a child under one. As a result, Rivers mum has expressed her concerns with being able to cope at home especially given the treatment plan that is required for River. She will need daily injections, syringe feeding, insertion and replacement of her Gastric Tube, oral medication and physio to improve muscle development.

Without funding, Crystal cannot afford the help and quality care she requires to properly care for her child. As River grows, she will need continued help and support to properly function in today's society.

Hence our plea to you...

Please help us, as a family, provide the care that Baby River needs to live a happy and bright future as much as medically possible.