Spotlight On Special Familes – CairnsMeet Liam, Jackson and Katie
PakMag loves to shine the spotlight on local families who have an inspirational story to tell. And they don’t come more inspirational than our featured families this month. Living with special needs is no easy feat, yet these amazing families’ positive outlooks and attitudes show that it is possible to have an amazing life in the face of adversity.
Five-year-old Liam lives in Mareeba with mum, Sonia, dad, Chris and big sister Kiera (16) whilst brother Josh lives in Nowra. Liam’s schedule is a busy one. Between riding his horse Danté, attending ballet classes at FNQ Dance Academy and watching the V8s whenever he can, Liam is one active little boy.
However, for Liam, keeping active comes with its challenges. Liam has Prader Willi Syndrome (PWS), a condition which means that even everyday tasks, such as sitting up straight and walking, are a huge effort for him, as his body does not produce growth hormones, resulting in low muscle tone.
PWS was responsible for the delay in Liam reaching his developmental milestones. He needed a frame to learn to walk and speech therapy to help his speech, which can still cause him troubles today.
Liam’s parents try to help Liam live as close to a normal life as possible and he participates in speech, hydro, equine, physio and occupational therapies to help achieve this. Things many of us take for granted, such as grabbing a quick bite to eat, are not viable options for Liam since PWS comes with certain metabolic issues that mean he must be on a strict diet to ensure he maintains a healthy weight.
“The biggest impact on people diagnosed with PWS is an insatiable hunger meaning they never feel full,” Liam’s mum, Sonia says. “This coupled with the lower calorie requirements means that people with PWS are at a very high risk of becoming obese and then suffering from all the health concerns that come with that.”
But against all odds, Liam’s illness does not define him. Sonia told us, “PWS is the label for Liam's diagnosis, but that isn't what makes him special. His love of life, the special connections he is able to quickly make with people and his flair for fashion and the arts are what make him special.”
Jackson is six-years-old and lives with his mother, Samanda, his father, David, sister, Jemma (11) and half-brother, Tristian (19).
Jackson was born in the Townsville Base Hospital as the Cairns Base Hospital was not equipped to deal with his premature birth at just 23 weeks and five days.
Jacksons’s remarkable journey is a testament to not only himself but also his loving family. Jackson suffered his first brain bleed during birth and at only one-week old, his left lung collapsed and he suffered a second brain bleed, this time on the other side of his brain.
As a result of prematurity, he was also diagnosed with Auditory Neuropathy (AN). At 10 weeks, he was diagnosed with Retinopathy of Prematurity (ROP) and spent three weeks in Brisbane receiving Australia’s first eye injections, a ground-breaking treatment which has resulted in him having perfect vision. At 13 weeks, he returned to Townsville Base Hospital and at 15 weeks he finally made it to the Cairns Base Hospital. Finally, Jackson was able to leave hospital at 127 days old!
Jackson suffers from cerebral palsy, chronic lung disease of his left lung, has a Mic-Key button for feeding and has traits of autism. He also has an intellectual disability with a Savant splinter which means, as Samanda describes, he can read and spell words well above his age level and has good speech, but he doesn’t understand the meaning.
The arrival of a new child into any family causes some disruptions with siblings but Jackson’s arrival and his extra requirements made things extremely difficult for his then 5-year-old sister, Jemma and his older half-brother Tristan. “Jemma felt pushed aside, she wanted our attention”, said Samanda. Tristian was upset by the fact that his mum no longer came to watch him play cricket, but Samanda said, “Jackson couldn’t cope outside, so it was impossible”.
Their family life is also affected by not being able to go on holidays, as the things they would need to take and the money required just don’t make it a feasible option. “That is hard on us all”, said Samanda.
These things might be hard but Samanda said she wouldn’t change a thing. “Jackson is the best thing that ever happened to me. He has taught me a lot! He is the most patient, happiest little kid, he does such funny things and is so loving and cuddly.”
When we asked Samanda to share a piece of advice for other parents with children with special needs she straight up said, “Focus on the positives, on anything good, it makes you smile.”
Showing this positive attitude, Samanda went on to say how lucky she was as she listed off all of Jackson’s abilities, “Positive gets you through and laughter is even better.”
The PakMag team met Katie when her mum, Melanie became a PakMag Ambassador and we knew we had to feature her story in this edition.
Nine-year-old Katie lives with her mum and brother, Jacob in Cairns and was born with L5S1 myelomeningocele, commonly known as Spina Bifida. Katie’s diagnosis came during Melanie’s 20 week scan and she was given a worst case scenario prognosis.
Melanie recalls how she was prepared for Katie’s birth, “I had the support of my wonderful parents and Queensland’s Spina Bifida and Hydrocephelas Association, who guided me through everything before Katie was born. When she was born she was incredibly lucky to have avoided the worst case and had a fantastic neurosurgeon who performed successful surgeries on her back and brain.”
Now, Katie is a full-of-life child and only slowed down by her need to wear Silicone-Ankle-Foot Orthosis (SAFOs) or wheelchair for long distances.
Katie has required catheterisation since she was 11-months-old, as a result of bladder and bowel incontinence. She recently had a MACE surgery in Brisbane which has been successful in managing her bowel incontinence.
“We travel down to the Lady Cilento Hospital in Brisbane every three to six months to see her team at the Spinal Clinic.” Melanie tells us. “Her specialists range from orthopaedics, neurosurgical, urology, paediatric, ophthalmology and physiotherapy.”
Katie’s condition does not affect her confidence and her inquisitive nature and love for nature and bugs means that wants to be an entomologist when she grows up.