Mother's bid to raise awareness of rare epilepsy condition in babies

On the surface, Adalind Judd looks like a typical rosy-cheeked one-year-old.

But the toddler is one of only 30 or so babies across Australia suffering from the extremely rare condition known as "infantile spasms".

The condition, officially called West's Syndrome, is a form of epilepsy that makes babies' bodies jerk uncontrollably, commonly beginning when they are four to five months old and set off when they wake up and fall asleep.

Babies with the condition suffer from hypsarrhythmia, clusters of spasms in uncontrolled bursts.

In Adalind's case, they occur up to four times a day, lasting around eight minutes.

The condition is so rare, sufferers often endure months without diagnosis or treatment. Failure to spot the condition early can lead to permanent brain damage.

Adalind's aunt, Kursty Colemane, revealed to Yahoo7 the daily ordeal her niece goes through.

"When it first occurred, she had absolutely no control of her body," she said.

"The medication she goes on has so many adverse effects she doesn’t sleep days on end and she is left screaming constantly."

A range of drugs are used to control the twitches, but it leaves them with what Kursty calls "roid rage" among other side-effects including considerable weight gain.

Luckily for Adalind, her diagnosis came when she was a few months old at Melbourne hospital. Her parents noticed a strange twitching while shopping.

The medical team knew straight away what the condition was after coming across the disorder previously, but others aren't as fortunate.

"Only a few families are affected," Adalind's mother Sherrie told Yahoo7, "meaning there's no advocates in its prevention and certainly no funding and awareness therefore most doctors haven't seen it."

Not only does Adalind's condition have an emotional strain on her family, there are significant headaches from the financial and logistical burdens.

The family lives in rural New South Wales and it takes them five hours to travel to Sydney for Adalind's treatment and research. Her average stay in hospital is four days, meaning hotel bills for her parents and time away from their four-year-old son.

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Aunt Kursty said the family were hoping to move interstate to be together, "but they've had to abandon that now because all their money has gone into medical bills".

"Genetic testing is very expensive," she said.

In the US this week it's Infantile Spasms Awareness Week and Sherrie is calling for a similar awareness campaign week in Australia to help with early diagnosis of the condition that could change lives dramatically.

Sherrie has taken it upon herself to front a movement of mothers trying to bring national attention to the condition. Aunt Kursty praises her sister's strength and other mums, who she says deserve considerable credit with their limited resources.

"It's had a massive effect on the family. My sister is a hero for dealing with this with whats on offer to help her - Adalind once screamed in discomfort for eight days in a row," she said.

"I don't know how she and the other mums do it."