Angus finds plenty of reasons to smile
SEVEN year old Angus Bowles hasn't had a lot to smile about in his short life.
However, a generous donation by a multi-national company and a local business last week has given the little Maryvale boy something to smile about.
Angus, who underwent a kidney transplant 12 months ago, has a tumour on his brain and suffers epileptic seizures on an increasingly regular basis, received a brand new RTV 900 Utility Vehicle, courtesy of Kubota and David Evans Group, Warwick.
His parents, Phil and Sonya Bowles, moved to their 319 hectare Maryvale property from Redcliffe a year ago, with Angus' three siblings, William, 11, Jorja, 9, and Abby, 5, seeking a better lifestyle for their family and Angus.
"We are not farmers, but we always wanted land, and Gus didn't seem to be getting any better," Sonya said.
The couple could hardly find the words to express their appreciation to Kubota zone manager, Nick Ridgway, of Brisbane, when he handed the keys of the RTV over last Wednesday.
"It will make such a difference to our lives on the farm," Sonya said.
"We will be able to get Gus out and about to see all the farm animals and have the peace of mind of knowing he is strapped securely into the RTV in case he has a seizure," she said.
"We want to get Gus outside and teach him what skills we can."
He was doing really well until 2010 when at age five, he suffered a cardiac arrest and we had to do CPR on him to keep him alive.
Previous to the donation of the Kubota RTV, Sonya said she transported Gus around the property in a three wheel pram, but that posed its own dangers when she was feeding animals including pigs, cattle, horses and poultry.
Mr Ridgway said Kubota endeavoured to help out in the community in whatever way they could.
"We heard about Angus' wish and we organised the vehicle for him straight away - it took about an hour to arrange," he said.
"We also donated two tractors after the 2011 floods to the Rockhampton City Council and Lockyer Regional Council."
As dealers for Kubota, David Evans Group, Warwick, was responsible for organising the delivery of the vehicle and sales representative Steve Blakemore made all the arrangements between Kubota and the Bowles family.
He said it was all worthwhile to see the smile on Angus's face when he took him for a test drive around the family property.
"Brisbane company, GME, also donated a UHF for Angus's RTV, while Gold Acres/Pathways donated a 200 litre fuel tank full of diesel," Steve said.
Phil Bowles said he was deeply humbled by the generosity of Kubota and the David Evans Group.
Angus was diagnosed with a small kidney at 10 weeks of age, and Phil said they knew then that he would eventually need a kidney transplant.
He was holding his own, but then at 18 months old, he was diagnosed with Pallister-Hall Syndrome, which is a rare genetic disorder.
Angus is one of only three people in Australia with the disorder, and one of only 165 world-wide.
Sonya said a benign tumour in the lower part of his brain, called a hypothalamic hamartoma (HH), was a characteristic of the disorder.
"This causes epilepsy and seizures on a regular basis. It also caused him to go through puberty when he was just six months old," she said.
"Back then he had the same testosterone as his father, which caused him to have
acne and become aggressive, among other symptoms.
"He was doing really well until 2010 when at age five, he suffered a cardiac arrest and we had to do CPR on him to keep him alive," Sonya said.
"He ended up in the Mater Hospital for three weeks, and went on to have three more cardiac arrests in the next two years. Subsequently he went onto Peritoneal dialysis, which he did for four months, however kept getting infections," she said.
"We then tried Hemodialysis for 12 months, and then we got the call."
Angus received his kidney transplant from the deceased donor register in September last year.
The most recent of his four cardiac arrests took place in August, 2012, just one month prior to his transplant operation, and he was airlifted from his Maryvale property.
But that was not the only time he has been airlifted from the Maryvale hills to medical treatment.
Angus's health took a turn for the worst during the flooding on the Australia Day long weekend earlier this year, when he lapsed into unconsciousness after suffering very high temperatures.
"I was at work in Warwick and couldn't get home across our flooded crossings, and the weather was too bad for the SES or CareFlight to get in to the property. It was just too dangerous," Sonya said.
"Phil said to me 'you better prepare yourself - I think we might lose him'," she said.
"So on the Tuesday after the weather cleared, CareFlight picked me up in Warwick and Gus up at home and flew us out. He had had a UTI (Urinary Tract Infection). Any simple infection can kill him."
After his most recent cardiac arrest, Angus's dialysis then went up to four times a week. Sonya drove him to Brisbane each week for his treatments.
"I've done most of the hospital stuff, and Phil keeps the home fires burning. It has always been a team effort," she said.
Angus' siblings all attend Maryvale State School, while Angus attends East Special School in Warwick. Sonya couldn't speak more highly of the staff at East.
"He has a lot of cognitive issues. The staff at East are fantastic. He has a lot of rages and tantrums also but they are all related to the tumour," Sonya said.
Angus is currently being treated under three different specialists, including kidney, neurology, and endocrine, at the Royal Children's Hospital in Brisbane.
Phil said at Angus' most recent doctor's visit, he received a good bill of health, and "renally was in very good shape. If it wasn't for his seizures, he would be very well," he said.
"He will need another kidney transplant, but it is hard to know how many years down the track that will be. In the last six months he has had a lot of bad seizures."
Phil said the family was faced with two options in the coming months and years.
"We can either take Angus to Phoenix, Arizona, for non-invasive laser treatment on his tumour to shrink it, or if that is not an option, he could have surgery in Melbourne," he said.
"With both though there are risks involved, as the procedures could make him worse, but his epilepsy is getting more severe and is affecting his quality of life."
Both Sonya and Phil freely admit Angus's future is uncertain.
"We just live for the moment, and make each day count, and if he reaches 10 then we will be happy," Sonya said.
But for now, Angus is thrilled at being driven around home in his new "ute", thanks to some very generous souls.