Little Boy’s Mystery Illness Causes Up to 50 Seizures a Day as Doctors Scramble for Cure
Doctors in Australia have been left baffled by a baby boy that is suffering dozens of seizures a day.
Zavier Elward was a healthy baby for six months, but one day his mother Shaileen Roberts noticed he would stare into the distance with a strange smile on his face.
“He was doing these really weird movements, like just looking up into the distance and his mouth was slowly twitching, sort of like he was smiling,” Roberts told 7News.
Initially, the baby would do this about once a day but it started to happen more frequently, prompting Roberts to rush her child to the hospital.
Doctors diagnosed Elward with West syndrome, a rare condition that starts afflicting babies between three to nine months old.
The babies are left with spasms and seizures that often come in clusters. There is no known cure and doctors are still working to figure out treatments and medications for the disease.
Elward has experiences dozens of seizures per day including one day of 150 seizures and one hour of 32 seizures.
— 7News Yahoo7 (@Y7News) March 13, 2018
Roberts told the Community News that her baby had been trialed on up to 50 different medicines since the diagnosis around one year ago.
“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.”
“They don’t know what it is, they’re just trial and error on the medications, just to see what works and what doesn’t,” Zavier’s dad Harley said.
Elward is now 18 months old but has regressed to the developmental stage of a 4-month-old.
Treatment costs are adding up, prompting Roberts and her partner Harley Elward to ask for help paying for them.
— 7 News Melbourne (@7NewsMelbourne) March 13, 2018
Medications and intensive therapy are costing the family over $3,000 a month.
“Treatments will mean everything to Zavier because he’s an 18-month-old baby and he’s only just learnt [sic] 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.”
According to the GoFundMe the family has launched, they would like $10,000. So far they had raised almost $7,000 towards that goal at the time of this publication.
“As you can imagine, Zavier has had a really tough start in life, but despite what he continues to endure, his personality grows bigger and more beautiful every day. He’s a little fighter! But he is also in desperate need of intense therapies to help ‘boost’ his overall development, and increase his chances for a better quality of life in the future,” the family wrote.
“However time is of the essence (he’s growing every day), costs are high, and funding is very limited!! This is why Zavier’s family is seeking your help!! All money raised will be used to cover costs directly associated with ongoing intense therapy sessions for Zavier.”