Midland family struggling to treat 18-month-old son’s rare West syndrome

ZAVIER Elward was a typical healthy and happy baby who was starting to crawl, feed himself and make ‘mamma’ sounds at six months old.

But one day that changed when his mother Shaileen Roberts noticed that he would stare off into the distance blankly with a “sort of smile” on his face.

Initially Zavier would do this once a day but when it started happening more frequently, the 22-year-old mother from Midland became concerned and took him to hospital where he was later diagnosed with West syndrome.

Also known as infantile epilepsy, West syndrome is a severe and rare condition detected in babies aged between three to nine months old who have spasms and seizures that often come in clusters.

Ms Roberts said she was thankful she noticed something wasn’t right with Zavier because while in hospital he had about 10-15 seizures a day where he wasn’t breathing and had to be put on oxygen.

“In hospital the seizures got worse, he had one for seven minutes and started vomiting and choking,” she said.

“The hospital put him in an induced coma and rushed him to ICU at Princess Margaret Hospital where it took about a week and a half to get the diagnosis before he was pumped with steroids to subside the symptoms.”

Zavier, who has experienced more than 150 seizures in one day and 32 in an hour, is about the third baby in WA to be diagnosed with the syndrome.

There is no known cure and the seizures are managed through trial and error of different treatment and medication.

Ms Roberts said Zavier experienced five different types of seizures and had been trialled on up to 50 different medications since diagnosis.

“He’s on five medications now twice a day and if they’re late at all then he’ll have a seizure,” she said.

“When he’s put on a new medication, it’s all very promising and he doesn’t have any seizures but then all of a sudden they come back.”

Babies with West syndrome often experience developmental delays, with each cluster of seizures affecting an infant’s ability to remember developments or things they’ve learnt before the epileptic episode.

Zavier is now 18 months old but has regressed to the developmental stage of a four-month-old and has to be retaught how to crawl, feed himself and make those ‘mamma’ sounds.

He needs a combination of physiotherapy, and occupational and speech therapy to help with his mental and physical development.

With Zavier’s father Harley Elward the breadwinner, Ms Roberts said the family needed financial support to help with payments for regular intensive treatments that would cost about $1500 over two-week blocks.

“Treatments will mean everything to Zavier because he’s an 18-month-old baby and he’s only just learnt how to roll again, he can’t walk, he can’t do anything that my niece who is the same age can do,” she said.

“They’d be life changing because after he had one treatment recently, he tried to sit up on his own so it will really benefit him in the long run.

“I want Zavier to have the chance of a normal life and treatment and therapy is his only chance.”

To financially help Zavier, visit the ‘Our fight to help Zavier’s plight’ GoFundMe page at http://bit.ly/2CuVErV.

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