Cattleman Philip Acton will swap out his saddle for a bike seat when he rides 1512km from Townsville to Brisbane to raise awareness for Inborn Errors of Metabolism (IEM) disorder which two of his and wife Sarah’s sons were born with.
The Acton’s lives were changed forever when son William was born and through the Newborn Screening Program (heel prick test) it was found that he had Phenylketonuria (PKU) a rare form of IEM which is treatable but not curable.
It was explained to the Philip and Sarah that they were both carriers of the PKU gene and a 25 per cent chance exists that their children will inherit the disorder, which is why eldest son Thomas doesn’t have it and their youngest Harry does.
Sarah said PKU is treatable but not curable so through their lives William and Harry will sustain a low-protein diet called Diet for Life and take an amino acid supplement three times a day to keep the devastating impacts of the disorder at bay.
“We also take them down to the Lady Cilento Children’s Hospital in Brisbane twice a year for their PKU clinics,” she said.
She said as long as the kids stick to their diet regime they’ll be able to live full rich lives without any problems.
“Without treatment though the impact of this condition can manifest in a wide range of health problems including brain damage, seizures, liver failure and in some cases death.”
“It was a big shock when we received the news about William and we were devastated initially, but by going through the treatment process with him I think we’ve become more resilient which helped us deal with things better when Harry was diagnosed.
“It also puts things into perspective when you see the terrible effects PKU has on infants in countries without the Newborn Screening Program.
“If we hadn’t had access to the program William and Harry would now both be severely mentally deficient.”
Philip said the ordeal has also taught them about the nutritional values of food.
“PKU has two forms, mild and classic, both our boys have the classic form, which means they have to have a very strict diet,” he said.
“William is allowed eight and a half grams of protein per day and Harry is allowed seven grams, to put that into perspective, one slice of white bread contains three grams of protein and a regular size egg contains six grams.
“Taking these sorts of requirements into account on a daily basis really makes you appreciate what other parents with special needs children have to go through; we’ve definitely become more empathetic people.”
Philip grew up on Millungera Station near Julia Creek and was working as the cattle operations assistant manager there before he and Sarah (a registered nurse) moved to Townsville temporarily in preparation for the charity ride.
Philip has taken on ride to be a good role model and to show his boys and the IEM community, nothing is impossible.
“I’d never ridden a bike in my life before I decided to do this, however I have adapted well.
“Coming off the land where I had a pretty physically active job meant my fitness level was OK already, it was more just getting used to the bike and fine-tuning it to reduce the tension riding causes in the pressure areas, being the hands, feet and the rear end.”
Philip said the training has been going well so far and that he’d worked out that by the time he arrives in Brisbane at the end of ride he will have clocked up approximately 3800km in 10 weeks.
“I rode 96km this morning which took about three and a half hours; that’s the last ride under 100km I’ll be doing for the next three weeks.
The charity ride will commence at the Townsville General Hospital on July 2 and will last 18 days finishing at the Lady Cilento Children’s Hospital Brisbane on July 19.
“To cover 1512km distance on time I’ll be riding approximately 100km per day for 15 days or close to four or five hours each day.
“I’ve had coaching from Des Beames who lived in Cloncurry for 22 years and now lives in Townsville.
“He knows the type of country I’ll be riding through very well, and he’s been very helpful in helping me achieve the conditioning I’m going to require to complete the task.
“When I’m off the bike and not resting up for the next day I’ll be visiting residents of the town’s I pass through to further spread awareness around IEM’s.
The "Ride with the Acton's" will raise much needed funds for the Metabolic Dietary Disorders Association (MDDA).
The MDDA nationally represents approximately 1500 individuals by way of support, education and helps fund research, enabling children, families and individuals living with an IEM to live a life of full potential.
“Our goal is to raise $20,000 for the MDDA which we’re well on the way achieving, we already have $17,150 in donations and we have $1500 sponsorship still to come in,” Philip said.
“The funds will help to train health professionals, and to further unite the IEM community, and enhance its support system.”
He said it was through the support of the MDDA that they realised everything will be o.k with their kids.
“We went to a retreat at the Sunshine Coast last year which was organised by the MDDA with other families who have children with IEM’s.
“It was great to talk to others in the same situation, and it was reassuring to see their kids running around playing with each other like any other child.”
Following the ride the Acton’s will appear as special guests during the ‘Paradise Lagoons Campdraft’, in Rockhampton to raise further awareness for the MDDA.
“Our personal goal is to show our children that anything is possible if you think outside the box, and that by supporting the MDDA they can rest assured knowing that the organisation will always be there for them.”
You can help spread awareness of IEM’s and the importance of Newborn Screening by donating to Philip’s charity ride on the website https://www.givenow.com.au/mddaridewithactons and by liking and sharing posts on the ridewiththeactons Facebook page.