Boggabri ‘The Little Town With a Big Heart’ showed its colours once again on Sunday with people gathering at Boggabri Golf Club for the family fun day to raise money for Liam Hobden.
Lots of old-fashioned games for the children kept all ages busy while parents generously supported the raffles and auction.
Bean bag toss, archery, duck catching, sack races, balloon darts, pin the wheel on the wobbly walker, tin can ally, face painting, toss the footy, jumping castle, Connect Four, and totem tennis had children lined up for their turn.
There was a pie eating contest, 40 metre dash for cash, hot dogs, sausage and steak sandwiches, coffee, cold drinks, popcorn, spinner wheel, silent jewellery auction, jewellery cleaning and polishing and lots of lucky door prizes.
The dash for cash was hotly contested between Liam’s uncle Mark Mowle and Liam Debrecency. Liam took line honours and then donated the $100 cash back to Liam’s fundraising humbly saying: “I just ran for Liam because he can’t run and I can.”
The pie-eating competition attracted a field of five. Chase Campbell started strongly as did Brayden Kleinschafer and Mikey Hausfeld. On the other side of the table were Maddalyn Varcoe and Desley Underwood.
A lot of people were counting on the males to finish first but they didn’t count on pie loving Desley who threw her hands in the air and declared, “I love my pies” as she took line honours.
At the end of the day an emotional Stacie Hobden, supported by her husband Luke and brother Mark gave an insight into Liam’s condition and the journey so far and thanked everyone for their support.
Liam has a rare genetic disease called Friedreich’s ataxia, it is a gene mutation that causes progressive damage to his nervous system and movement problems. The nerve fibres in his spinal cord and peripheral nerves are degenerating and will continue to degenerate.
The peripheral nerves are what carry information from the brain to the body and from the body back up to the brain to signal the muscles to generate movement. Liam is already at the stage of needing a walker at a very young age.
One in 30,000 people are born with Friedreich’s ataxia in Australia and Stacie is aware of three in Boggabri.
Liam was born on January 27, 2012, very healthy with milestones all above where they should have been, he learnt to read and write long before kindergarten. As he aged, they noticed he was quite clumsy here and there. He was referred to a paediatrician by a schoolteacher, but still no answers. Stacie remembers being in a room with four paediatricians and all unsure of what to do or where to go to next.
The family had to change schools due to severe bullying because he couldn’t keep up with the other kids running.
Stacie said as much as it hurt seeing him bullied it was a godsend as they ended up at Boggabri Public School and he has flourished every day since being there with the school’s amazing support.
Towards the end of 2021 they had changed paediatricians and were not in the consultation for more than five minutes when the doctor said, “he has ataxia, there’s no doubt about it, I’m not sure what type, you will need to see a neurologist”.
Almost four years of back and forth to doctors and finally they had some answers.
Stacie recalled how in October 2021, after seeing a neurologist and doing ampules upon ampules of blood for testing, their world was ripped apart. They received the call to say that Liam had the rare genetic disorder Friedreich’s Ataxia.
Stacie had already done some research on all types of ataxias when the paediatrician said those words, and she knew that there is no cure, life expectancy isn’t great, it’s a one in four pregnancy chance and she was pregnant with their new little boy.
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.
Luke and Stacie are both carriers of the genetic mutation, any of their other children, Ella, Lokie and Harley could have it but they have not had them tested yet as they are not showing any symptoms and hopefully never do – so the family is jumping one hurdle at a time.
Liam has had numerous blood tests, all sorts of scans and tests as well as seeing an occupational therapist, physiotherapist, speech therapist, neurologist, cardiologist, dietitian, audiologist and his general practitioner.
The youngster has been accepted into a trial in Thailand for stem cell therapy. The treatment is not available in Australia and Stacie said she does not have a choice; she must give her child every opportunity to lead a normal life or at least a life past childhood.
They started the fundraising journey in February 2023. The goal was to reach the total amount just for Liam’s stem cell therapy which is a massive $55,000. Luke and Stacie were dumbfounded by the price and were prepared to sell their house on a few acres to get Liam some help.
When some of their close family circle found out they wanted to rally behind the family. To date the fundraising has netted $45,000 and with funds to come from the Maules Creek camp draft and Sunday’s family fun day the target of $55,000 should be reached.
Stacie and Luke said it is very hard to have your life and family struggles out in the community, however, the response and support from people wanting to give their boy the best life possible is amazing.
Stacie and Liam will leave Boggabri on July 29, 2023, to travel to Bangkok to start treatment.
Read more about Liam here: Liam Hobden fights Friedrich’s Ataxia – The Courier (courier.local.tiemens.com.au)
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