'I want to go home': 13-year-old Phelicity Sneesby's dying wish

Phelicity Sneesby, 13, of Ballina, who has a congenital heart defect.

"She knows she is probably coming home to die. For you and I, home is where we go every day. For someone like Phelicity, it is a special treat. As a kid who has spent most of her life in hospitals, home is a special place."

The cost of getting her home from the United States on a special medical flight is $US150,000 ($A212,000). Her family can't afford the fare and hope to raise the funds online. More than $100,000 had been donated via flyherhome.com by Saturday.

Mr Sneesby, who runs a business designing and making microphones, spoke to his daughter by phone that same morning. "We want to bring her home but we're mortgaged to the hilt. She is extremely excited that everyone loves her enough to help her fly home."

Phelicity Sneesby, 13, of Ballina, who has a congenital heart defect.

Phelicity's parents plan to move her to a Brisbane hospital for a few weeks, in the hope that her health will improve. "If she makes a slight recovery we'll keep fighting. But if there's no change we will bring her home. You can't live life like that."

Mr Sneesby returned home to Ballina with Phelicity's siblings - Mahalia, 15, Arabella, 10, Elizabeth, 6 - in December. Phelicity remains with her mum at Ohio's Nationwide Children's Hospital, in midwest America.

It's the same hospital in which Phelicity was born, 13 years ago. During the pregnancy, she was diagnosed with hypoplastic left heart syndrome - a birth defect that affects blood flow, basically meaning the patient has half a heart - and given little hope of survival.

Phelicity Sneesby, with her father Ben, is excited to be coming home.

Mr and Mrs Sneesby were advised to terminate the pregnancy. They instead packed up their lives and moved to Ohio, where doctors undertook pioneering surgery. Phelicity spent her first six months in the US, where she had three lifesaving operations.

She has had 28 operations in her short life, including four open-heart surgeries. Her most recent operation was on Monday, when doctors inserted a stent into her heart.

At age six, she developed the rare condition of protein-losing enteropathy, which severely damages the immune system. Survival rates for sufferers are extremely low. But Mr Sneesby says Phelicity was in relatively good health over the first half of last year, riding her pushbike and asking her parents for a pool.

She enjoyed only one swim before falling ill again and returning to hospital in June.

But she remains positive, Mr Sneesby says. The family are devout Jehovah's Witnesses and Phelicity's faith gives her strength. "Despite everything, she is one of the most positive people I have ever met," he says.

"She said to her mum the other day 'I want a block of chocolate' and when she said no, she smiled and said: 'Mum, I'm not getting any better, just give me the chocolate.'

"She has hope that she is going to live forever. To her, this is a small chapter - it isn't the end."

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