Six-year-old Scarlett is a happy girl with a fun-loving personality, and a wicked sense of humour. Earning the affectionate title of “princess” from her family, Scarlett loves having her hair and nails done, and is a huge fan of mermaids, unicorns, dolphins and Justin Bieber!
While her infectious smile and outgoing personality shine through, Scarlett lives with a medical condition so rare it doesn’t even have a name. In fact, she’s one of less than 200 known cases of people worldwide to suffer from the disease. In mum’s words,
“Scarlett is a charismatic little girl, with a heart of gold, the strength of a warrior and tolerance of a buddha.”
Despite first-time parents Kate and Marcus facing complications during pregnancy, their test results were reassuring. Even when Scarlett was born with club foot and a cleft palate, all post-delivery testing suggested she was otherwise in full health.
When Scarlett was a couple of months old however, her parents started to notice she seemed a little bit “floppy” and wasn't hitting the same milestones as other babies her age.
“It was when we were at a pediatrician appointment for Scarlett's reflux that we heard a word that would completely change our lives forever. Scarlett was a "hypotonic" baby, which seemed terrifying to us. It meant she was ‘floppy’ with low muscle tone, but it could also indicate a serious underlying medical condition.”
As she got older, Scarlett was unable to hold her head up or maintain eye contact and continued to fall behind on developmental milestones. Progressively Scarlett began to show abnormal movements and was also behind in her hearing and vision, but despite a lot of medical tests, no answers could be found on what was causing Scarlett’s condition.
As a final measure, her parents sent a sample of Scarlett’s saliva to America for advanced genetic testing. It was then that Scarlett was diagnosed with a rare genetic disorder known only as GNB1 mutation, which controls a crucial signaling system in the cells of the body.
“It was like looking for a needle in a haystack because we have thousands of genes and she’s got this tiny little mutation on one of her genes that has a massive impact. We were devastated and scared, but relieved to have a diagnosis...though it is so rare you never know what is going to happen.”
Since then, Scarlett’s life has been a series of health challenges, intensive therapy, and around the clock care. She has the severest form of Cerebral Palsy, hearing and vision impairments, is epileptic, and is tube fed. She has endured frequent hospital admissions, surgeries and procedures, and is sometimes isolated in the ICU, away from her beloved little sisters Sophie and Olivia.
Whenever Scarlett’s health allows, Captain Starlight is on hand at the hospital to help keep her beautiful smile shining bright. Mum Kate says Scarlett loves her play time with the Captains, especially when Captain Starlight brings their magic bubbles.
When Scarlett had to spend her second birthday in the hospital, Captain Starlight was there to bring some much-needed cheer to the family. As a former volunteer in the Starlight Express Room herself, Kate knows exactly how important it is for Captain Starlight to bring happiness to families at the hardest of times.
While admitting having to accept their daughter may never walk, talk, sit or crawl was “devastating” for them as a family, her parents feel blessed to be the parents of a little girl who brings them “unimaginable joy”.
“The truth is Scarlett has taught us what is important in life. You don’t have to see, you don’t have to hear, walk or talk to be an amazing human being. You only need to love. You only need to feel things right through your soul and smile as if every day is your last.”
Recently, Scarlett and her family have returned from a special holiday on the Gold Coast, which they chose as Scarlett’s Starlight Wish. Due to her mobility restrictions, Scarlett loves the freedom she feels in the water so a hotel with a pool, by the beach, and close to the theme parks was an easy choice for their getaway.
Scarlett had a ball playing in the water and checking out the amusement parks. With Scarlett’s love of dolphins Seaworld was a real highlight, and sister Sophie was beside herself to meet her heroes Paw Patrol!
For their parents, one of the greatest outcomes of their trip was the strengthening of bonds between their girls. While they already adore each other, their wish gave the sisters the opportunity to sleep in the same room for the first time ever, and to get outside and enjoy the world together as a family.
To those who support Starlight in helping to make hospital a happy place for kids like Scarlett, Kate would like to pass on this message:
“Thank you from the bottom of my heart for helping to bring joy and happiness to these beautiful little kids who go through so much and deserve even more. Starlight really does help make this journey easier, and lets kids enjoy their childhood because kids need to play and have fun.”
