Keeping calm and carrying on

Sisters Violet and Amaiah suffer from epilepsy and the range of complications the condition brings with it. One of these is overstimulation, which is something the Satan’s Little Helper team thought we could help with.

Jamie’s daughters – three-year-old Violet and one-year-old Amaiah – both suffer from epilepsy.

“Violet was diagnosed at a few months old, after several tonic clonic seizures,” explains Jamie.

“She suffers from a rare condition called Paroxysmal dyskinesia kinesigeni. I hoped Amaiah might have skipped the epilepsy gene, but she had her first seizure at three-months old and was subsequently diagnosed after a blood test.”

Paroxysmal dyskinesia kinesigeni is characterized by abnormal involuntary movements caused by a sudden movement or being startled; a tonic clonic seizure involves the body stiffening and jerking, a symptom many people commonly associate with the effects of epilepsy.

A waiting game

Jamie is currently working out how to help Violet and Amaiah manage their symptoms as they get older, including the risk of losing control of their movements and frequent migraines.

To protect Violet through the night, and provide warning to Jamie if a seizure occurs, Violet sleeps on an EMFIT seizure monitor pad.

“I’m trying to raise the funds to get one for Amaiah as well,” she says.

Both girls take anti-seizure medication twice a day, which comes with its own downside.

“The medicine is extremely sedating,” explains Jamie. “We try and take things one day at a time.”

Sleep success!

While there’s sadly nothing Satan’s Little Helper can do to help the siblings with their condition, we are in a position to help with some of the symptoms. So, we sent them both a white noise toy to help soothe their brains at bedtime.

“It has been such a blessing,” says Jamie. “My girls absolutely love it! Amaiah sleeps through the night now, which is huge, and Violet says it really helps her too.

Satan’s Little Helper is also about providing joy and fun, so we also sent a family pass to Kiwi Valley!

“They love animals and are super excited about seeing and getting up close to them!”