CHLOE Zahrooni was just five weeks old when she suffered her first seizure.
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Eight long, painful years later their frequency has significantly increased, she lives in constant pain, she can’t have a normal night’s sleep and her only means of ingesting food is via a tube inserted into her stomach.
“On a very good day for us she will have 10 to 15 seizures,” mum Rashin said.
“A horrible day is she will have them every half an hour.”
Compounding an already dire and almost unimaginable predicament for the family is a seemingly impenetrable bureaucratic roadblock because she lives on the opposite side of the border where she is seeing a neurologist at Melbourne’s acclaimed Royal Children’s Hospital.
Dr Jeremy Freeman put Chloe’s name forward for a trial to test a cannabis-based drug in the hope it reduces the number of seizures she suffers.
Not the ultimate cure to her severe case of epilepsy she is fighting.
But she was refused a trial spot because she lives in Lavington and in a double blow for her family, Chloe is also ineligible for a similar scheme in NSW because she is seeing a Victorian-based specialist.
“Any reduction in the seizures will be a miracle,” her mum said.
“We’ve tried different diets, everything, but at the moment we have nothing left.”
The red-tape impasse could even have another layer with the Victorian health department’s refusal for Chloe to be part of the trial potentially being in breach of the Albury Wodonga Health agreement which stipulates equitable access to all programs for people on both sides of the border.
The Border Mail has contacted the cross-border health service for comment with the matter referred to the Victorian Health Department.
The department could not comment during the caretaker period of the Victorian election which will be held on Saturday.
“It’s so not fair because her doctor of eight and half years is saying she needs it,” her mum said. “It is heart-breaking.
“It is the only hope we have at the moment and it is being taken away.
“She is in pain every single day of her life because we live in Lavington and not Wodonga.”
Dr Freeman said he was confident the cannabis-based drug could be of benefit to Chloe.
“We’ve certainly had some success with children not having seizures for prolonged periods of time,” he said.
“It is very expensive. In NSW there is a compassionate access scheme, but they have different criteria to Victoria’s scheme.
“If she lived less than 10 minutes south of where she does she would be eligible to have compassionate access under the Victorian scheme.
“It may or may not work for her, but it is at least something worth trying.
“If she didn’t have seizures she would have a better quality of life, she would be able to get to school more often and be more alert when she is there.
“Her parents wouldn’t be up to her overnight when she has them.”
Chloe can only attend school for two hours, two days and has to be accompanied by her mum.
The seizures are at their worst at night with a bath or shower often needed to calm her.
She is wheelchair bound and travelling to Melbourne for treatment is problematical.
Flying is not an option for the youngest of four children due to elevated blood pressure levels.
Her mum is essentially a full-time carer and hasn’t worked since she was born.
“While she is in pain how can I do anything else?” she said.
NSW-based cross-border commissioner James McTavish and his newly appointed Victorian counterpart Luke Wilson could hold the key to the issue.
They are aware of Chloe’s situation and are trying to find a way through the maze of seemingly unnecessary red-tape.
“In this instance it appears neither the NSW or Victorian schemes accommodate Chloe,” Mr McTavish said.
“For some reason she is slipping through the cracks.
“We are working to see how we can resolve that not only for Chloe, but other patients in border areas.”