Heading off to the community baby health clinic, mum Angie could not have known what lay ahead.
Despite being a happy little bub, Montana had not gained as much weight as she should have by her eight-week check-up. In the weeks that followed, Montana continued to drastically lose more weight.
Angie recalls the fear seeing her little girl so unwell. “Montana had chronic vomiting up to 20 times in 24 hours. Her weight loss was diagnosed as ‘failure to thrive’ and she had a nasogastric feeding tube inserted.”
Worryingly, even with the feeding tube, Montana’s weight continued to decline to the point where she dropped off the percentile chart.
It was during a hospital stay to treat her failure to thrive that Angie noticed Montana’s eye slightly moving from side to side.
Doctors urgently scheduled an MRI and little Montana at just four months old, was diagnosed with incurable brain cancer.
Montana's parents Angie and Heath were heartbroken. Confused, upset, and worried for the future, they felt completely blindsided receiving such a shocking diagnosis for their little baby girl.
The day Montana turned five months was the same day she had brain surgery to remove what they could of the tumour.
“It was a devastating and traumatic time” recalls Angie. “We went to hospital and didn’t come home for eight weeks”.
The family's lives became consumed by hospitals, medical jargon, surgeries, and treatments.
Angie was forced to give up work and spent most of her time at the hospital with Montana as she underwent chemo. The financial strain on the family was enormous, and Angie dearly missed spending time with Montana’s siblings, Liam and Charlotte who in turn missed their mum and the normality of their daily routines.
The family was hit with further anguish when Montana was diagnosed with hydrocephalus and needed surgery to have a shunt inserted.
Throughout their entire ordeal however, Captain Starlight was there to help the whole family cope with the trauma of their experience.
When Montana was still a little baby, it was Liam and Charlotte who discovered the wonder of the Starlight Express Room. The young siblings would visit every day, offering them a break from the stress of their baby sister’s illness, and the clinical world of the hospital wards.
“My ten-year-old still remembers her first visit to the Starlight Express Room when the Captains made her laugh so much,” says Angie of daughter Charlotte. “That was nearly six years ago now but the Captains have always been so incredible. They’re really great at being fun, but also understanding the needs of each child.”
As she has become older Montana also loved to enjoy time in the Starlight Express Room with Captain Starlight.
Having lived her entire life in and out of the hospital, undergoing treatments and attending countless check-ups and appointments, Montana, now six, has started to become aware of how her life differs to other kids her age.
She has less opportunities to do things like play in the park and make new friends her own age. Her ongoing treatment includes frequent hospital admissions and three-monthly MRIs under general anesthetic to monitor the tumour.
But whenever Montana is around the hospital, Captain Starlight is there to brighten her day.
“Montana loves the Starlight Express Room.” says Angie “It makes her day so much better after long waits and procedures at the hospital. It is such an amazing, positive and fun place for her to go. “Everyone knows her name and she feels incredibly special there.”
For Angie and Heath, it’s hard to fathom what their experience would have been like, without Captain Starlight and the Starlight Express Room there to bring light and laughter into their lives during their darkest time.
“I can’t imagine life without it to be honest” says Heath. “Hospital would have been very scary and very dull for all of our kids, with nothing to look forward to, or no one to laugh with.”
To those who support Starlight, we can only say a huge ‘thank you’ for helping keep this incredible program going for kids and families who really need and deserve it.”
