Friends rally around prominent NSW fishing identity and mother-of-four Melanie Nast Young after devastating diagnosis

Several months ago, four NSW children lost their grandfather.

Just weeks later, the children were rocked by the death of their father.

They have now been told their mother has just six months to live.

Melanie Nast Young is only 45 but has been diagnosed with a rare genetic condition that is causing her organs to shut down.

A lung and heart transplant might be the only thing that could save her, however a neurological movement disorder she’s been battling for the past 10 years has made the surgery largely futile.

With Young’s condition deteriorating daily and the time she has left with her family dwindling, a fundraiser has been set up to help financially support her children and partner when she is gone.

Friends have also been rallying around Young, a prominent figure in the fishing world who once operated a successful fishing lesson business for kids and people with disabilities.

“It’s the worst story,” best friend Mischelle told 7NEWS.com.au.

“You couldn’t even write a worse story.”

Young, who lives in Bega, was first diagnosed with dystonia about 10 years ago.

The movement disorder causes the body to spasm or contract involuntarily and, as a result, parts of the body can twist or form abnormal positions.

“I’ve seen her whole body twist and contort and ... I’ve seen her ... actually (have) her leg turn all the way around the other way,” Mischelle said.

There is no known cure for dystonia.

Despite her illness, she continued to operate Young Guns Fishing Adventures with her ex-partner Todd Young, who is also father to three of her children.

Together they taught thousands of kids how to fish over 20 years, working with school children, those with disabilities and at-risk youth.

Young was also passionate about empowering women through teaching the sport, close friend and GoFundMe organiser Frank Prokop told 7NEWS.com.au.

“Her passions in life are teaching the next generation about how to move forward and to overcome obstacles and she uses fishing as her mechanism,” he said.

“Fishing is a quite strongly male dominated activity so she’s kind of come in and said ‘here I am’.”

Prokop said Young was a great example of teaching resilience as she continued to work and give back to the community despite battling dystonia.

“She (says) I’m not brave, I’m just stoic. You just got to get up and do it the next day, because there’s no do-overs. It may not be fair, but it’s just the reality,” he said.

In March, Young was devastated by the loss of her father to lung cancer.

While attempting to deal with his death, Young also tragically lost her ex-partner Todd to cancer not long after.

Despite no longer being together, the pair remained extremely close while they co-parented their three children.

Todd was also a father figure to Young’s seven-year-old daughter, whom she had with her current partner Jason.

Mischelle said Young was too busy looking after her father and Todd that she did not realise how sick she herself had become.

“While Todd was in his final stages, when we knew he probably wasn’t going to have a lot of time left, she stayed at mine for a few weeks and I noticed how little she was eating and how unwell she was herself, like just coughing up a lung,” Mischelle said.

“She wasn’t worried about herself and kept saying ‘I’ll deal with that afterwards ... let’s worry about Todd’.

“I thought maybe it’s just all the stress, she’s just lost so much weight and of course, as it turns out, she was dreadfully ill herself.”

Around this time Young was hospitalised multiple times with pneumonia and she was increasingly finding it hard to breathe.

After investigating what was going on doctors diagnosed her with Alpha1-antitrypsin (AAT) deficiency, a genetic condition that causes lung and liver damage.

AAT is a protein made in the liver that helps protect the lungs from damage caused by infection and irritants that have been inhaled.

A deficiency in the protein means an increase in the risk of chronic lung and liver conditions such as emphysema, which Young was also told she had.

The severe damage to her lungs, which are now operating at only 25 per cent capacity, coupled with her dystonia which is exacerbating the problem, means Young only has a matter of months to live.

She has also suffered damage to her heart and doctors are investigating if her liver has suffered as well.

A lung and heart transplant may be her only hope, however that option is fraught with risk.

Even if Young did survive the surgery, her dystonia would likely make the recovery very difficult, Mischelle said, meaning she’s not the most eligible candidate.

“At best she might have six months but if she gets any type of illness in the interim, like we could lose her just from anything,” she said.

Mischelle said Young’s children had struggled to deal with the news as they are still reeling from the death of their father.

“I think they just, it’s so unfathomable, they can’t deal with it,” she said.

“Its horrendous.”

Prokop, who set up the fundraiser, said he originally was hoping to raise some money so that Young could tick off a few bucket list items, however she is currently too unwell.

Instead, the money will now go to her three children who will be left without any parents, and her current partner who will become a single father to Young’s seven-year-old.

“She’s worried about what legacy she leaves her kids,” he said.

“I think more she’s interested in now putting stuff away for the kids, for their education and stuff.”

No matter how much she’s tried to support Young and her family, Mischelle said she feels entirely helpless.

“I’ve ... never heard a worse story. I’ve prayed so much for Todd and and Melanie and the family, I just feel so sick about (what’s) happened to them,” she said.

Just over $4500 has been raised for Young and her family so far.