Mum Julie Gravina’s liver transplant wish to help twins Isaac and Charlize lead a normal life
PROUD Theresa Park mum of twins Julie Gravina wants what every parent wishes, for her children to grow up happy, healthy and to lead a normal life.
Macarthur
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PROUD Theresa Park mum of twins Julie Gravina wants what every parent wishes, for her children to grow up happy, healthy and to lead a normal life.
Her 15-month-old twins Isaac and Charlize are both on a liver transplant waiting list because they have the very rare metabolic disorder Propionic Acidemia which affects 1 in 250,000 births in NSW.
The twins are unable to eat and break down protein properly and they are fed through a nasal tube.
“Every time they get sick they regress and don’t feel well for a couple of weeks,’’ she said.
“The disorder affects their entire body and they have spent alot of time in hospital managing even the most simple things like the common cold.
“It is an awful disease and is only caused if both parents are carriers.’’
Mrs Gravina and husband Paul are determined to raise awareness so Isaac and Charlize can receive an “amazing gift’’, a liver transplant, and the chance to have a normal life.
“We are hoping that they receive their gift of life soon and before the disease causes further brain damage,’’ she said.
Mrs Gravina said being unable to break down protein properly causes acids and harmful substances to build up in Isaac and Charlize’s bodies and this in turn affects the brain and every organ.
“Their disorder causes damage to all of their organs, muscles, tissue, and progressive brain damage and it could ultimately take them any day of the week,’’ she said.
Mrs Gravina is speaking out in the lead up to DonateLife Week, which starts on July 31, to encourage people to join the Australian Organ Donor Register online and to share their decision with family and friends.
She is a registered organ donor herself and signed up 19 years ago in 1997.
“I hope that our story inspires other people to think about things and if it (registering to become an organ donor) is something you would like to do, to register online and to have that conversation with your family,’’ she said.
“Think about these things before the unexpected happens, because it may never happen, but if it does, your family will know what your wishes and intentions are
The couple also who have a four year old daughter Amelia, who does not have the disorder.
When Charlize was five days old, Mrs Gravina noticed her daughter was not feeding, was cold and turning grey.
The family rushed to Campbelltown Hospital.
Charlize’s body was overcome with ammonia (acid), which was toxic to the body and she went into a comatose state.
She remained in hospital and during this time Mrs Gravina received the newborn screening results for the twins and they both tested positive for the disorder.
Charlize was transferred to the neonatal unit at The Children’s Hospital at Westmead.
It was during this time that Isaac started showing sysmptons of the disorder.
The twins remained in intensive care for a month before being able to return home.
Isaac has been on the liver transplant waiting list since March and Charlize since May.
Mrs Grevina has also started the Facebook page Isaac & Charlize’s Journey with Propionic Acidemia and Liver Transplant to raise awareness about the family’s journey.
To register to become an organ donor, visit donatelife.gov.au
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