ADZ Lowe and his mum Holly will today board a plane to Melbourne to find out if a potentially fatal blood disease has returned.
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Mrs Lowe hoped Adz had kicked Langerhans Cell Histiocytosis, a rare condition causing tissue damage, when doctors gave him the all-clear in January.
Now they fear it might be back.
Mrs Lowe, of Glengarry, said Adz was first diagnosed in 2012, when a rash appeared on his abdomen, and a lump on his forehead.
She said the disease meant Adz had too many white blood cells in his body, and instead of protecting him, the cells in increased numbers were causing tissue damage.
"Because it's in the body and it's in the blood, it can spread around to any organ that has blood in it, and it can be fatal," Mrs Lowe said.
When a series of scans and biopsies revealed the disease had affected his bowel and his gut, Adz was flown to Melbourne where a specialist could take better care of him.
"Because it's in the body and it's in the blood, it can spread around to any organ that has blood in it, and it can be fatal,"
- Mum Holly Lowe
Mrs Lowe said seven weeks of chemotherapy and steroid treatments did little to diminish his happy, cheeky attitude.
"He's just himself all the time, no matter what he's going through, he's just smiling, happy, racing around, and people couldn't believe it when I actually told them he had a blood disease," she said.
Told Adz would be clear of the condition in January, Mrs Lowe and her husband Adam started planning for another baby.
However, when Adz was hospitalised and diagnosed with diabetes insipidus last month, doctors said it could be related to a return of the disease.
"Now I'm pregnant and it looks like we're going through it again, so that's been hard," Mrs Lowe said.
Mrs Lowe said she didn't know how long they would be in Melbourne, as it depended on Adz's medical outcome.
But she said a $600 donation from the David Chaplin Trust Fund meant that her husband would be able to join them.
Mrs Lowe said she sometimes questioned her family's bad luck.
"But I think well, someone's got to go through it, and there's others out there a lot worse, people who have actually lost their babies to this disease," Mrs Lowe said.
For more information on the David Chaplin Trust Fund, contact Natalie Ashdown on 63367351.
jstephens@examiner.com.au or twitter @jodiestephens1
