![Ken Hughes and Matt Gillham and their fellow Roos honour Liam Hobden's courage. Picture: Facebook Ken Hughes and Matt Gillham and their fellow Roos honour Liam Hobden's courage. Picture: Facebook](/images/transform/v1/crop/frm/KUhQizDbwW8WqAyPP4x5yp/fd4ff61b-1c31-4a74-934d-7bc6aed67c2b.jpg/r0_0_1758_1276_w1200_h678_fmax.jpg)
Stacie Hobden was 14 weeks pregnant with her fourth child when her life was irrevocably altered.
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Learning that her then nine-year-old son, Liam, had Friedreich's ataxia - a degenerative nervous system disease - sent Stacie and her husband, Luke, down a road that will eventually take them to a Bangkok hospital and stem cell therapy that they hope will improve their son's quality of life.
The Hobdens, who operate a farm at Baan Baa near Stacie's hometown of Boggabri, plan to start the 21-day treatment at the Better Being Hospital this year. It will cost $55,000.
The couple have launched a fundraising drive to get their 11-year-old son on the plane to Thailand.
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And at Jubilee Oval in Boggabri on Saturday, the town came together to raise money for his overseas trip.
The Boggabri Kangaroos wore a special jersey to mark the occasion, in their opening round upset of the Bears. The fundraising activities included an online jersey auction.
A gofundme page has also been set up for Liam. More than $10,000 has been raised.
Stacie was not sure of the overall fundraising total. "But I'm pretty sure we're close to where we need to be, which is really amazing, because we only started this in February," she said.
"We'd like to thank everyone for their support, especially everybody in Boggabri," she added.
![Liam and Stacie are joined by Roos captain Matt Gillham. Picture Facebook Liam and Stacie are joined by Roos captain Matt Gillham. Picture Facebook](/images/transform/v1/crop/frm/KUhQizDbwW8WqAyPP4x5yp/f38d318c-a0f6-4929-919e-809776b70bc3.jpg/r0_0_1536_1485_w1200_h678_fmax.jpg)
"Because it's been quite amazing, very overwhelming. Every time I get on the microphone to try and say thank you, I go all blubbery."
Liam was six years old when his teacher at Boggabri Public School noticed that his motor skills were askew. Stacie and Luke had thought he was "a little clumsy".
Over the next three years, the Hobdens saw a number of pediatricians. "We just weren't getting anywhere, and I kind of had had enough," Stacie said, adding that they then looked for another doctor.
In Moree, they met with an Armidale pediatrician who travelled. "And within 10 minutes, he said, 'He's got some form of ataxia - you need to see a neurologist. Bang, bang, bang - and then it was just go from there. Like, it was very hectic in a small timeframe."
!["We'd like to thank everyone for their support, especially everybody in Boggabri." Picture: Facebook "We'd like to thank everyone for their support, especially everybody in Boggabri." Picture: Facebook](/images/transform/v1/crop/frm/KUhQizDbwW8WqAyPP4x5yp/ee9f812c-1e1e-4b2d-a7c4-3ebfb9746396.jpg/r0_0_2916_1437_w1200_h678_fmax.jpg)
It was in October 2021 that a Newcastle neurologist examined the results of genetic tests and relayed the terrible news to Stacie and Luke.
Friedreich's ataxia is a rare disease caused by a gene defect inherited from both parents. It damages the spinal cord, peripheral nerves and the cerebellum portion of the brain.
Generally, children and teens develop the condition, which gradually worsens over time. As the disease progresses, people suffer from unsteady and awkward movements and a loss of sensation due to nerve damage.
There is no cure. But some "potentially breakthrough treatments are under study", according to the US-based Johns Hopkins Medicine.
Stacie said it was hoped the stem cell therapy would "regenerate those bits and pieces that are deteriorating".
![Stacie set up a Facebook page chronically Liam's fight. Picture Facebook Stacie set up a Facebook page chronically Liam's fight. Picture Facebook](/images/transform/v1/crop/frm/KUhQizDbwW8WqAyPP4x5yp/14257a60-4b4e-4ce0-9896-41ac4df43c4c.jpg/r0_0_1640_856_w1200_h678_fmax.jpg)
The Hobdens want Liam - who is in year 6 and plans to attend Carinya Christian School in Gunnedah next year - to "have a better childhood, and to be able to do things".
"Because when you're diagnosed with this as a child, sometimes the life expectancy is very good," Stacie said.
"And even if there's a one per cent chance that he can get even, like, 20 per cent of his mobility back, we're happy to give anything a go."
Friedreich's ataxia sufferers tend to have shorter lifespans than normal. Many suffers live until at least their 30s, and some live into their 60s or beyond.
And when he has good days, we all feel good.
- Stacie Hobden
Grimly, it's possible that Stacie and Luke's three other children also have the disease. As mentioned, Stacie was pregnant with their fourth child when Liam was diagnosed.
"So they told me I could have the test done for the baby in utero, but that will also carry a high risk of miscarriage," she said.
"And I just said, 'I can't go through with that, and then come home without a baby,'" she added.
Stacie and Luke's three other children have not been tested for the disease. "We just thought, we're worry about this hurdle first," Stacie said of Liam.
"But we do know the signs [of the disease] from what Liam went through. If we see something, we'll just jump back on to the neurologist."
The Hobdens find joy on Liam's good days. On those occasions, "we all feel good", Stacie said.
"And the main thing is, he's still here. So that's what we've gotta be thankful for."
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