In November 2000 Justin, a beautiful boy weighing 9lbs 4oz, was born. A couple of weeks later his mum Sara received a phone call that would change life as they knew it forever. Justin had been diagnosed with cystic fibrosis (CF) on his newborn screening test, one of the first babies in Western Australia to be diagnosed this way.
The Early Years
Confirmation of Justin’s diagnosis followed with a positive result on his sweat test. In WA, CF had only been added to the newborn screening test, or Guthrie test, 3 months prior. Had it not been for newborn screening Justin may not have received a diagnosis for years and would not have been able to access the treatment he needed as early as he did. This would have had a detrimental impact on Justin’s health.
Naturally, Justin’s family were in shock on receiving the news but mum, Sara and dad, Tony quickly realised that they had to learn all they could about CF to best look after their little boy and so began the journey.
Mum reports that Justin was a calm baby, he responded well to touch and was easy to settle. He took to percussion straight away and actually enjoyed it, often falling asleep. Justin was breastfed for eight months, solids being introduced at 3 months and taking enzymes was just a natural process as this is all he had known. He always had a good appetite and since the age of ten or eleven, Sara says she can’t feed him enough!!!
Annual bronchoscopies and lung function were performed and Justin didn’t have too many admissions when he was young. He had three admissions in 2012 and then annual admissions up until this year.
When Justin started High School he was diagnosed with diabetes. At first, the family thought it was just the stress of the new school and all that high school brings, but with the obvious signs of a thirst that couldn’t be satisfied, and increased visits to the toilet, he soon had a diagnosis of diabetes. Justin’s diabetes is more like Type I diabetes though, so he has the added challenges of managing insulin injections four times a day and needs to be very aware of when and what he is eating. Having the diagnosis presented even greater obstacles and Justin is still working hard on overcoming his needle phobia.
With increased time spent in hospital this year, Justin has had the challenge of keeping up with school work. Kerry, the school teacher liaison for PMH, has been wonderful in setting up a plan for Justin, arranging to have work forwarded by his school teachers and assisting Justin to get back on track.
There are day to day challenges for Justin and Sara too such as finding the time they need to set aside for treatment. Justin says, “I have quite a lot of treatments I need to fit into my day and sometimes I struggle to do all the things I want to do when I am feeling unwell.”
Justin dreams of becoming a famous soccer player with Manchester United, as their goal keeper. They have started the process toward applying for a scholarship to play soccer with one of the colleges in America. This is through NSR Australia. He has attended the initial try outs and has been conditionally accepted, as long as he gets a ‘C’ average for his school subjects. He is currently in year 10 and his favourite subjects at school are sport, maths and science. If he can achieve B’s or A’s this will increase his options and improve his chances for a soccer scholarship.
Justin is very aware however, to have a contingency plan and is also interested in becoming an auto mechanic. This way he will have a trade to support him as he gets older.
When asked to talk about the highlights in his life so far, Justin’s face lit up and he talked enthusiastically about his Starlight Wish, arranged by PMH and the Starlight Children’s Foundation.
His had his wish in 2015 when he met with the Socceroos! He was invited to one of their closed training sessions, one day before a big game, at nib Stadium in Perth. He met with the players and was presented with a book and poster hand signed by all the team. Sadly, his hero, “Matty” Ryan wasn’t there as he was recovering from knee surgery. “He is my favourite as he the goal keeper and this is the position I play. It was a very special day!”
Justin enjoys playing sport and this has helped keep him as healthy as possible. He is obviously a very talented sportsman as he has received many achievement awards for both athletics and soccer, including an award for sportsmanship and courage. He currently plays for Belmont Villa Soccer Club under 18’s as their goal keeper.
Another highlight for Justin was being our Great Strides ambassador and winning a signed West Coast Eagles jersey and a cricket bat signed by Australian cricket captain Michael Clarke.
Justin’s brother Nat is also mentioned as a highlight in Justin’s life and even though he now lives in the wheatbelt town of Cunderdin, he visits as often as he can.
Article from RED Magazine, Edition 4, 2016.