Toddler Nate Jones battling in hospital with Langerhans Cell Histiocytosis

Battler: Toddler Nate Jones is battling a rare disease called Langerhans Cell Histiocytosis. Picture: Supplied

Battler: Toddler Nate Jones is battling a rare disease called Langerhans Cell Histiocytosis. Picture: Supplied

Toddler Nate Jones is a true Aussie battler.

The 15-month-old from the Sutherland Shire has just started his third course of chemotherapy at Sydney Children's Hospital, to treat a rare disease called Langerhans Cell Histiocytosis (LCH).

Nate suffers from multifocal LCH, which means the disease has spread to many parts of his small body including his spleen, liver, stomach and blood.

Treatment for the disease includes aggressive chemotherapy, with Nate’s last round of chemo lasting six hours per day for six days in a row.

Last week he started his third course of chemo, which has been wound back to two hours a day for three days in a row.

“It’s been really hard,” mother Kristy Durrant said. “I basically live at the hospital. My husband stays at home [in Woronora Heights] and keeps working and takes my son to school.

“But there is so many families here at the hospital in a similar situation, and that certainly gives you support.”

Nate was first rushed to hospital last September, during a family holiday in Queensland. He was vomiting green bile and came down with a bad rash. 

He was transferred to Sydney Children's Hospital, where he remains, and was diagnosed in October.

His mum said he had a big journey ahead of him.

“The treatment is suppose to last 18 months. But you have to get to each crossroad, I guess. It is a day by day thing,” his mum said.

“We have seen paper work that said he had, at the stage he was at, a 30 to 40 per cent survival rate. 

“But the doctors haven’t said anything about [percentages of survival]. And I’m aware that there is long-term effects that can happen later on.”

His mum said her and her husband, Alan Jones, received some good news earlier this month that the last course of chemo had prevented the disease getting any worse, and Nate would not need a bone marrow transplant. “It was a massive win for us not to need a bone marrow transplant. We have to take any wins.”

She said other good signs included Nate not needing a blood transfusion for three weeks, of which he has now had 15. 

She said the support Nate and the family had received in the last few months had been amazing. “It’s absolutely overwhelming. It’s just amazing the support we have had like that financial support and friends dropping off meals and people all over Australia praying for us.

“So we have been very lucky with the amount of support, and our families have been awesome.”

Nate featured in a Channel Ten news story in November, where Prime Minister Malcolm Turnbull met him and ended up in tears.

People can still support Nate, and his family, online through a Go Fund Me page.

Money goes towards helping the family with basic costs, as Nate’s mum has had to stop working, and also towards buying expensive medication which has helped make part of his treatment less awful.

His mum said the doctors, nurses and staff at Sydney Children's Hospital in Randwick had been fantastic.

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