Seven-year-old Nate is an easy going and curious kid. His mum Lauren describes him as ’logical, cluey and intuitive.’
“It’s his curious streak that means Nate asks us lot of questions about his health and doesn’t understand why we can’t pre-empt when he’ll get sick again and have to return to hospital,” she says.
Nate has had to cope with a range of complex health issues all his life.
In Nate’s early years he had a number of severe respiratory episodes which included times where he would stop breathing, these issues have been ongoing and often affect his daily life. He had been under the care of a paediatrician from the time he was six weeks old and from six months was under the care of a rapidly growing medical team.
At just under 2 he was diagnosed with Bronchomalacia and asthma, coupled with food allergies, and some neurological concerns. Nate became a familiar fixture at the hospital.
Nate has a neurological condition, which although benign, has caused many complications, especially from the age of 4. These complications have led to many visits to emergency, multi day admissions to the ward, trips in ambulances, scans and even some minor brain surgery. These episodes can be frightening for him, and his family, as they are often without warning or have a known trigger.
Nate’s various medical conditions means he will require ongoing care in the children’s hospital until he reaches adulthood. This will include scans, monitoring of progress and checking in with various members of his team to check he is on track.
“I can’t remember a time when Nate wasn’t ill,” Lauren said. “He’s had medical intervention since he’s been little, so we’ve never known any different.”
Nate is cared for by teams of paediatric specialists including genetic health, respiratory, neurology, immunology, neurosurgery, endocrinology as well as a speech therapist, and an ophthalmologist. He will enthusiastically attend any appointment or testing at the hospital with the promise of a visit to the Starlight Express Room afterwards. It eases the way for his medical team and his parents.
Managing the logistics of Nate’s weekly and monthly appointments and treatment schedule can be at times non-stop.
“We’ve had to have very clear communication where we list out every specialist and where they’re located so if Nate’s staying with family and something happens, they know what do in an emergency,“ dad Ryan explains.
Lauren can only work part-time because of the ongoing appointments and the level of uncertainty. Ryan works full-time so often misses Nate’s appointments but will go to major ones and can also be dialled in from the hospital.
Despite all the demands of his complex medical needs, Nate is a “pretty chilled kid.” Lauren says he can be shy at first and is never one for the limelight.
“Nate can get anxious and reluctant to tell someone if he feels sick because he doesn’t want to return to hospital. This can be especially problematic if he is at school or in the care of anyone else. He’s a non-fuss kid so doesn’t like the attention of ‘being sick’.”
Thankfully in hospital there’s a place where Nate can simply be a kid.
In the Starlight Express Room, Nate can be himself, play and relax between all of his appointments - it keeps the normality for him. It is often the highlight of his week.
Lauren jokes they only have one rule in the Starlight Express Room: for Nate to do craft with the Captain Starlights first and then he can do something screen-related!
“The Captain Starlights do everything with Nate to distract him and tap into his interests. They make Pokémon with him and create games about aliens and telescopes when he’s into Space things. I genuinely believe there is nothing they cannot achieve.”
Spending so much time in hospital takes its toll on the whole family. “Having the Starlight Express Room in hospital helps distract Nate and all of us from the impacts so much hospital time can have on our lives,” Lauren said. “It’s a place where Nate is accepted and comfortable.”
One of the hardest parts for Nate is the lack of personal control. As Ryan says – a simple headache could mean a trip to hospital for Nate. There’s a lot of uncertainty with Nate’s various conditions and this in turn has had ongoing implications for Nate’s behaviour. He likes routine and at one point, Nate was refusing to attend school, but with the positive boost of the Captains and the support of his wonderful teacher he now attends school willingly.
“The Captain Starlights are great at responding to his random requests like making wind chimes, giant chickens or Christmas decorations – we have these all at home as a constant reminder of them!”
Hospital is all Nate’s ever known, it’s as normal to him as a trip to the park might be for another child and will continue to be for many years to come.
With that in mind, Lauren and Ryan are so thankful Starlight will be there with them every step of the way.
“Starlight is an integral part of Nate’s treatment. The Captain Starlights are an important part of Nate’s medical team. We often say, there’s not much the Captains can’t fix. Starlight is one of the most positive things to come out of Nate’s medical experience and we can’t thank you enough.”
