Brave Bella shows great courage while suffering daily seizures
WHILE most nine-year-old girls are learning how to braid hair or hosting sleepovers, brave Bella suffers daily seizures and spends most of her time in hospital.
Pride of Australia
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MOST nine-year-old girls spend their days scraping their knees on schoolyard asphalt, learning to braid hair or hosting sleepovers. Not Bella.
Bella has spent the best part of eight and half years in hospital hooked up to lifesaving machines — the only things standing between her and Sudden Unexpected Death in Epilepsy.
Her mum, Helen Owen, is the reason she is alive.
Countless sleepless nights of holding her daughter as she experiences hundreds and thousands of cluster seizures for minutes or hours — hoping against hope Bella will not die tonight.
“Any one of them can kill her,” Ms Owen said.
“Her seizures are severe; they come from everywhere in the brain ... which means Bella is not a candidate for brain surgery. She is literally growing up in hospital.”
Bella has an extremely rare catastrophic form of epilepsy called PCDH19. It is incurable and almost untreatable.
“To date, there are only several hundred cases worldwide and the spectrum is vast,” Ms Owen, who has been nominated for the Pride of Australia Medal, said.
“Bella however is one of the worst known cases worldwide.”
On the rare occasion Bella gets to be at home, in Werrington Downs, it is only one or two days before she is rushed back to The Children’s Hospital at Westmead.
Bella loves going for walks outside — it is the closest she gets to a normal childhood.
“I feel so helpless not being able to stop my daughter’s constant suffering,” Ms Owen said.
“She should be playing outside enjoying a childhood not confined to hospital, existing, but hardly living.”
Bella has been nominated for the Pride of Australia award and Ms Owen wants to draw attention to the plight of those suffering from the disorder ahead of PCDH19 awareness day on November 9.
For more information about PCDH19 and what support is available visit pcdh19info.org.
You can also follow Bella on Facebook at Bella the Brave Epilepsy & Austim Warrior.
The Pride of Australia Medal recognises ordinary Australians who reflecting the core value of giving for the good of other people, their community and their family.
To nominate someone for Pride of Australia at prideofaustralia.com.au