Sammi with Captain StarlightThere's not much 12-year-old Sammi doesn't know about Hogwarts! She's an avid Harry Potter fan who loves reading and writing stories. When she's not engrossed in a book, she's hanging out with friends.

Sadly, when Sammi was eight, she began to struggle with pain in her legs.

Her mum Elissa said the pain got progressively worse and spread to her daughter's arms, stomach and back.

"She needed crutches just to get around and missed more and more school because her body was so sore and the pain and exhaustion were unbearable."

Later that year, during genetic testing for hearing loss, Sammi, her brother Harry and dad, Michael were all diagnosed with Stickler Syndrome, a complex congenital disorder. 

Elissa said they felt some relief to finally have a diagnosis.

"Once you know the condition you're dealing with, you can start to find the best ways to help."

Stickler Syndrome is a rare condition that causes hearing loss, joint and dental issues, chronic pain and fatigue.

Sammi is cared for by a team of specialists including nurses, occupational and physiotherapists, paediatricians, dentists and orthodontists.

She wears hearing aids and suffers constant pain and fatigue. Despite every hurdle she faces, she’s incredibly brave and determined.

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Sammi won't let her condition stop her from achieving anything in life, but still every day is tough.
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Sammi's mum, Elissa

Family life is very different since Sammi’s diagnosis. Elissa said they need to be prepared for whatever each day may bring.

"We're always trying to find the ideal balance between activities and breaks. But then Sammi can wake up and everything changes, so our plans need to change too."

Sammi has regular outpatient appointments at Monash Children's Hospital and Royal Children's Hospital Melbourne where thankfully Starlight's hospital services are there to give her some much-needed fun and laughter.

Sammi with Captain Starlight

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The impact Starlight has had on our family is immeasurable. Starlight gives Sammi so much joy and happiness.
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Sammi's mum, Elissa

Elissa describes Starlight as part of their family and for Sammi being a 'Starlight kid' is a big part of her identity.

Sammi first discovered the Starlight Express Room when her younger brother Harry was in hospital.

Now, if one child has an appointment the other will come just so they can spend time together in the Starlight Express Room.

Sammi and brother Harry in the Starlight Express Room

Having fun with Captain Starlight and doing craft in the Starlight Express Room always cheers Sammi up no matter what news she's had from her doctors. Sammi always feels welcomed and included and it’s a place where she can be herself.

Elissa said Starlight brings fun and laughter to an otherwise daunting environment for sick kids.

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No kid wants to go to hospital or to an appointment, they just want to be kids and that's what Starlight gives them. Starlight is all about fun and happiness and all kids need that, but especially kids with a serious illness.
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Sammi's mum, Elissa
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