“Genevieve has spent alot of time at The Royal Children’s Hospital with alot of different teams looking after her. These teams have all been amazing both during her admissions and before and after. Genevieve has dealt with Gastroenterology, Genetics, Metabolics, Immunology, Allergy, Dietician, Ophlamology. she has had surgery on her liver, as well as a Port put in. Been put through ultrasounds and x-rays, countless blood tests.
Genevieve spent her 1st Birthday in ICU at the RCH. After falling ill, and being in Acute Liver Failure. Since then, she has had multiple other admissions both in the ICU and on the Cockatoo Ward.
With the help of the specialist teams, doctors and nurses at RCH, Genevieve is still here with us today, happy and healthy most of the time. We are in regular contact with these teams, and will continue to be in contact with them for years to come.
Genevieve has a rare condition, where she can go into acute liver failure if she gets a fever. She has a gene mutation called NBAS, which sets this off, however we do not know the tipping point of when the acute liver failure begins or how many times it can occur before it stops recovering. There has been talk of a liver transplant, however we are not there yet luckily, as this can open up a whole lot of other medical conditions.
There is no cure, only preventative maintenance, we are forever watching, checking temperatures, and making sure she is happy to help prevent episodes.
Genevieve is now a happy cheeky 4 year old, who attends 4 year old Kinder. Her life involves: regular hospital visits, port flushes, follow up appoinments with different medical teams. Genevieve has grown up alot quicker then most kids her age, she is not afraid to show you her scars, talk about her port, or show you photos from her hospital visits. She is very resilient and takes each day the best she can, she does not stand down from a challenge.”
– Aimee, Genevieve’s Mum