Mum Julie Gravina devotes self to saving twin Charlize after son Isaac loses battle with rare disease

JULIE Gravina’s 21-month-old son Isaac died from a rare disease last month, despite a liver transplant, now she’s raising money to save the life of twin sister Charlize and other kids who suffer from the affliction.

Isaac Gravina, 21 months, died on January 23 this year. Picture: Ian Svegovic

• Mum Julie Gravina’s liver transplant wish for twins Isaac and Charlize

PROUD Theresa Park mum Julie Gravina is devoting herself to raising funds to save her surviving twin daughter Charlize and other children from a rare disease in memory of the baby’s twin brother Isaac who lost his battle and died last month.

Issac and Charlize were born with the rare metabolic disorder propionic acidemia which affects one in 250,000 births in NSW.

Due to the disease, the siblings were unable to eat and break down protein properly and were fed through a nasal tube.

Mrs Gravina said the disease caused acids and harmful substances to build up in Isaac and Charlize’s bodies and this affected the brain and every other organ.

Theresa Park's Paul and Julie Gravina with their three children Charlize, Amelia and Isaac. Picture: Vara Photography- Andrea Ayrey

There is no cure for the disease.

Mrs Gravina and husband Paul hoped a liver transplant would help their children have a normal life and when Isaac had his operation a few months ago they were filled with great hope.

Mum Julie Gravina pictured with children Amelia, Charlize and Isaac, who died on January 23.

“Isaac was doing remarkably well after the transplant and he was the best he had ever been,’’ Mrs Gravina said.

“He’d say mama and he would watch TV and point and say dinosaur. He was able to eat protein and his body was getting stronger.

“He always wanted to be outside with his dad. He was loving life.’’

However Mrs Gravina said the transplant was not a cure for the disease and the acid in his body was still 10 times the normal amount.

Isaac later developed complications including blood clots and was rushed to hospital when he developed a high temperature.

Twins Isaac and Charlize Gravina were born with the rare metabolic disorder propionic acidemia which affects one in 250,000 births in NSW.

Tragically, Isaac did not recover. He went into cardiac arrest and died on January 23 at age 21 months.

“I feel so blessed to have had 21 months with him,’’ Mrs Gravina said.

“Isaac was the sweetest little boy. He was so happy and he loved his life.

“He’s have some off times in hospital but I was always there. I never left him. I would squeeze his hand and he would squeeze mine back.’’

Following Isaac’s death, family friend Kiro Athanasiadis started a Go Fund Me campaign called Charlize’s Metabolic Fundraiser to assist the Genetic Metabolic Team at The Children’s Hospital at Westmead.

Siblings Isaac, Charlize and Amelia Gravina pictured at home last year.

“We want to intervene and help the team raise as much money as possible. We want to help before Charlize goes down the same path that many children go down,’’ she said.

Mrs Gravina said more than $6600 had been raised in the campaign’s first four days.

“Even the smallest donation will help to make a difference,’’ she said.

The campaign currently has a target to raise $50,000 but the family hopes to raise as much money as possible so the hospital’s metabolic team can fund more resources, research and treatments for diseases and ultimately save more children.

Mrs Gravina said she hoped that sharing her story would encourage other people to make a donation to help raise the vital funds.

TURNING A HILLS HOIST CLOTHESLINE INTO A SWING

The couple’s oldest daughter Amelia, 5, who started kindergarten this year, does not have the disorder.

Mrs Gravina has also set up the Facebook Facebook page Isaac & Charlize’s Journey with Propionic Acidemia and Liver Transplant to raise awareness.

CLICK HERE TO SIGN UP FOR OUR NEWSLETTERS AND NEWS ALERTS