Winston's story

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WinstonWinston is known as the 'Little Fighter' in his family.

The toddler was born with a rare brain disorder called Polymicrogyria which causes Early Infantile Epileptic Encephalopathy (often called Ohtahara Syndrome) a debilitating form of epilepsy with seizures not being able to be controlled.

Winston also has Cerebral Palsy, issues swallowing, uncontrolled movements, Global Developmental Delay and Cortical Visual impairment.

Mum Barbara said at the time of Winston's diagnoses, it felt like their world fell apart.

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We went through a lot of pain and tears but we are stronger for it. There were moments where we weren't sure if we were going to make it through. But if there is one thing that we have learnt is that our beautiful boy does not go by the book. He certainly put up a fight to be with us.
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Winston's mum, Barbara

Winston needs round-the-clock care and with three older boys; Wyatt, 13, Jacob, 12 and Joshua, four, Barbara affectionately describes family life as a 'bit messy.' 

Winston and family

The boys adore spending time with their baby brother, but sadly Winston is often too unwell to venture out to be part of family activities.  But Barbara and her husband, Adam, are so proud of their older boys who love Winston to bits and always try to involve him in whatever they do. They’ve become such humble and caring kids and are so protective of their 'Winnie'.

At 20 months, Winston has a cheeky smile and when he can, he loves observing the trees, feeling the grass on his hands or feet and listening to whistling.

"Of course, we would prefer to see Winston healthy and happily running around like any other toddler, but we are grateful for everything he has taught us," Adam said.

The family have had to install specialised medical equipment at home including oxygen, feed machines, suction machines and oximeters to monitor Winston's vital signs.

Winston requires a nasogastric tube for feeding, needs oxygen at times, has daily medication and four different therapy appointments each week. There are "no breaks or holidays" from his therapies. Winston's seizures cause him to wake frequently during the night and he needs help to resettle.

Winston in hospital

"Caring for Winston can leave us exhausted.. We usually only get three nights of proper sleep each week as this is when we have nursing support. Unfortunately, the very important "me" time for Adam and me as parents has gone by the wayside," Barbara says. 

Hospital is also a constant in the family's life. Winston’s seizures lead to frequent emergency admissions and in 2019, he spent three and a half months in Perth Children's Hospital.

During his time in hospital, the happiness that Captain Starlight brought to the family was invaluable.

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Captain Starlight adds that sparkle to a somewhat dark journey through hospital. They really brighten our days.
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Winston's mum, Barbara

The Starlight Express Room provides entertainment and distraction for Winston's older brothers whenever they visit too. It gives the family something fun to look forward to and breaks up the days in hospital.

Winston's brothers in Starlight Express Room

"Being in hospital with a sick child and an active toddler in tow, is not easy. The Starlight Express Room helps keep us all happy and occupied," Adam added.

Captain Starlight always brings a smile to Winston’s face and even made a surprise ‘virtual’ appearance at a recent Telehealth appointment!

Barbara says the positivity that Starlight brings to kids and families dealing with hospital and treatment is vital.

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Starlight is crucial to the mental health of the whole family. The Captains bring such an infectious positive spirit and make your child feel that they're not the 'sick kid' but are part of a team of superheroes in hospital.
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Winston's mum, Barbara

Barbara is so thankful to Starlight supporters. "Before we commenced this journey, I would never have appreciated how important Starlight is helping to make the journey less traumatising for families like ours. Thank you so much for your support."

Winston will also be embarking on a Starlight Wish with his family and Adam said they’re really looking forward to creating beautiful and long-lasting memories together.

"We try to make the most of every moment and every cuddle we have with him. Winston  has the most beautiful smile and we hope to capture as many of them as possible," he said. 

Winston smiling

Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.
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