Liam Hobden is a lovable larrikin who gets around in his specially made walker while wearing a big smile despite the hand that he has been dealt.
Ten-year-old Liam, from Baan Baa, is the second child of Stacie and Luke Hobden.
Liam said he is 10 but turning 11 and loves science, maths and Minecraft.
Liam has an older sister Ella, two younger brothers, Lokie and Harley, and a lot of friends at the Boggabri Public School. Liam spent four years at Narrabri West Public School before moving to Boggabri Public School.
Liam has been diagnosed with the genetic disease Freidrich’s Ataxia, which is a relatively rare disease of the nervous system characterised by the gradual deterioration of nerve cells (neurones) in the spinal cord and brain causing loss of coordination.
Other symptoms include loss of balance, walking abnormalities, speech difficulties, swallowing problems, increased risk of respiratory infections, numbness, scoliosis, fatigue, and two out of three people will have associated heart problems called cardiomyopathy and unfortunately Liam is one of those people who has cardiomyopathy.
Friedreich’s Ataxia is inherited in an autosomal recessive pattern, meaning both parents have one altered gene, but don’t exhibit any symptoms themselves, since they have a second healthy copy.
There is no cure, but some of the symptoms can be managed with medication, surgery and physical therapy.
Liam was nine-years and eight-months-old when diagnosed.
Stacie was pregnant with Harley and was talking to her sister-in-law who has a son who was born blind.
Her sister-in-law suggested looking into stem cell therapy overseas where they are travelling for Stacie’s nephew.
Stacie and Luke had met with a lot of doctors and specialists without getting any answers as to why Liam was having problems.
Luke said “Liam had a lot of trouble learning to ride a bike, and they didn’t know why.
“He seemed to start okay and then kept getting worse instead of better. Falling off, not coordinated.
“We didn’t know if he was being lazy or if something was wrong,” he said.
“We now know that the symptom of Ataxia prevents the messages passing smoothly between neurones and muscles, leading to poor coordination and movement.”
“I was having a look on Instagram on genetic testing and while scrolling I found Ataxia and the further, I scrolled the more I was saying to myself and Luke, that’s what Liam has,” Stacie said.
“I was devastated when I read that there was no cure. “It also said that one in four pregnancies results in Ataxia and here I was pregnant with Harley.”
“My pregnancy with Liam was natural and healthy, just normal.”
Stacie, Luke and Liam were tested with devastating results.
“I look around and see what the other kids are doing and what I did as a child. We take so much for granted.
“It’s distressing when a little boy can’t enjoy jumping on the trampoline, riding his bike, climbing trees, playing sport and will have a short life expectancy but we are trying to treat him as a normal boy in the family situation.”
Liam has had numerous blood tests, all sorts of scans and tests as well as seeing an occupational therapist, physiotherapist, speechtherapist, neurologist, cardiologist, dietitian, audiologist and his generalpractitioner.
Liam has been accepted into a trial in Thailand for stem cell therapy.
The treatment is not available in Australia and Stacie said they don’t have a choice, they have to give their child every opportunity to lead a normal life or at least a life past
To enable the family to participate they need to raise a significant amount of money to enable Stacie and Liam to travel to Thailand for the three-week admission to hospital for the stem cell therapy and specialist program.
The trial offers three options, six, seven and eight blocks and all vary in price and of course effectiveness and costs are in the vicinity of $55,000.
Friends and family are rallying and organising fundraising events such as a garage sale, colour run and a raffle.
Stacie said she appreciated all that is being planned.
“I’m happy for any help that anyone can give and hope that it covers some of our costs, if we have to, we will have to sell our house in Narrabri,” she
Liam and his mum are hoping to travel to Thailand in October while Luke and the other three children keep the home fires burning.
Originally, they would have liked for Luke and Stacie to accompany Liam but they said with the other children needing to be looked after and the farm needing attention for three weeks it would be a big ask and they were not sure how the younger members of the family would cope with both mum and dad away for three weeks.
Stacie and Luke’s wish is for the community to be aware of this disease and to appreciate every day with their loved ones.To order photos from this page click here