Evies Story
Tuesday 20th Jan
Easter Monday 2019 just days before Genevieve’s 1st
birthday was the moment our lives were about to change, and we had no idea what
we were in for. To this day, the days all rolled into each other: the blur of
beeping, signing consent papers, doctors talking, repeating our story a million
times, being moved into an ICU room, people visiting, trying to recall what we
had done the last few days to work out if anything could be the cause, the lack
of sleep, the microsleeps, the tears 😢 It’s something as a parent you never want to go
through and would never ever wish it upon anyone. But once you become a
'hospital parent', for me I feel your perspective changes on a lot of things.
Genevieve has spent a lot of time at The Royal
Children’s Hospital with a lot 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, Metabolic, Immunology,
Allergy, Dietician, Ophthalmology. She has had surgery on her liver, as well as
a Port put in, which now need replacing – so another surgery in the next month
or so. 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 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 7-year-old (almost 8 if you ask her), who attends primary school as a Grade two student. Her life
involves: regular hospital visits, and admissions, port flushes, follow up
appointments with different medical teams.
Genevieve has grown up a lot quicker than 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. I know there are
people out there a lot worse off than Genevieve, who have spent a lot longer in
hospital then she has. But this can only be done because of how wonderful, and
what amazing jobs the doctors, nurses, and behind the scenes staff can do, not
only for your child, but supporting the parents along the way as well.
The Good Friday Appeal relies on the support of the
community to raise funds to ensure that The Royal Children's Hospital is able
to continue to provide world class care to patients and their families. The
hospital treats over 44,000 children in the wards and medical centre, 91,000 in
Emergency and sees over 470,000 through Telehealth or as outpatients in the
community each year. So please help by giving whatever you are able to this
fundraiser and help spread the word by sharing this page with your friends,
family and networks. Thank you for your generosity, it means a lot!
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