When she grows up, 13-year-old Annie dreams of working with horses - she lives and breathes them. Her mum, Luci, says her daughter is passionate about horses and loves to ride whenever she's well enough. "It's the one time I believe I see her truly happy," she said.
These moments of happiness are so important to Annie, who has battled a range of complex health conditions her whole life.
Annie was born with hypoglycaemia, meaning she had dangerously low blood glucose levels. She suffered from ketotic hypoglycaemia (very low blood sugar levels) until she was six. This meant she was in and out of hospital with viral and bacterial infections. It was during one admission when she was just four, that doctors discovered issues with her kidneys. Annie had kidney, skin and muscle biopsies to try and determine a diagnosis for her symptoms. It wasn't until she was ten that genetic testing showed an extremely rare genetic disorder (that is yet to be formally named.)
"Ours has been a long journey to a diagnosis," Luci said. "Annie's been ill on and off her entire life."
Sadly, Annie faced further health issues and this year, following a bone biopsy she was also diagnosed with an auto inflammatory disease called chronic recurrent multifocal osteomyelitis (CRMO). This disease causes inflammation and lesions inside her bones.
To combat her illnesses, Annie must take lots of medication and is often in lots of pain. This year she has spent over six weeks hospitalised, and outside of hospital she tires very quickly from any physical activity - often limited to short stints. Luci said despite everything Annie endures, she's a fighter with a wicked sense of humour who rarely admits how much pain she's in.
She loves horse riding, hanging with her cousins, but also enjoys her own company and likes to read and watch YouTube clips.
It's extremely tough to have a child that looks like nothing's wrong and struggles to communicate how they feel or where they hurt. It's stressful for us as parents to make decisions about health issues we aren't well-versed on. But Annie always puts on such a brave face, and we're determined to do the best we can with the support of those close to us.Annie's mum, Luci
Annie's two brothers Archie and Oscar have been equally brave. Luci said the boys worry a lot about Annie and it's meant they've had to grow up and be independent from a young age. Luci and dad Gavin are frequently away from home and separated from the boys - with Annie in hospital or taking her to specialist appointments - and have had to reduce their work hours to care for Annie's needs.
Thankfully the Starlight Express Room has been a haven for the whole family to enjoy. Whenever Annie's in hospital, Captain Starlight entertains her with funny stories and makes balloon horses to cheer her up, and her brothers love to play video games in the room. In fact, when Annie was younger, it was the promise of visiting the Starlight Express Room by her parents, that helped them drag Annie to hospital.
As soon as Captain Starlight appears, Annie's mood brightens even when she's not feeling great.Annie's mum, Luci
There are more bright moments on the horizon for Annie now she's been referred for a Starlight Wish. Given her passion for horses, Annie's Starlight Wish is to head to the Gold Coast for a family holiday and to celebrate her 13th birthday by attending the famous Outback Spectacular show! Check it out below...
Her mum said it's given Annie so much joy to plan and think about something that she would like to do, and the kindness of Starlight supporters means to the world to their family.
When a lot of choices are made for her medically, the gift of being completely in control has been priceless. To have something to look forward to as a family that we couldn't have provided for her financially is overwhelming.Annie's mum, Luci
Luci is so grateful for the support the family has received and said it has helped her cope emotionally.
On days that are extra hard, I've thought of Annie's Starlight Wish and it makes those days easier to get through. If you support Starlight, I honestly thank you. You have made a difference to our life.Annie's mum, Luci
After the exciting lead up to her Starlight Wish, Annie's dream family escape to the Gold Coast was nothing short of spectacular! Check it out below...
The family enjoyed much needed time together away from hospital and the chance to experience all the fun and action of the legendary show. At the end of the show Annie was thrilled to be given a special t-shirt signed by the cast and one of the performer's special, sparkly good luck belt buckle - which Annie still wears with pride!
Her mum said the whole experience was beyond wonderful.
To see the smiles and happiness in Annie is so rare, I can't express how amazing it was. I feel so thankful. It's been nothing short of life-changing for all of us.Annie's mum, Luci
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