Jacalyn Kerr lives every day knowing that any day her daughter Ember will “gain her angel wings”.
This is the grim reality the Queensland family grapples with, as Ember’s rare form of epilepsy means the two-year-old can suffer up 60 seizures a day and requires an oxygen tank and CPR equipment nearby at all times.
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Ember was just nine months old when she had her first seizure.
Parents Jacalyn and Joshua wanted their only child desperately, and went through fertility treatment to have her.
Prior to her first seizure, Ember was a happy baby — until she wasn’t. The first time she seized, it was totally out of the blue.
Her parents rushed her to the local hospital in Ipswich, where they were told she’d had a “brief resolved unexplained event (BRUE)“.
They would watch as she had multiple seizures over the next two weeks, before getting her admitted to the Queensland Children’s Hospital in Brisbane.
When the seizures were happening, Ember would hold her breath and turn blue.
Jacalyn had to watch on, helpless, as her daughter went stiff and suffered for up to five minutes at a time.
“It’s very traumatic,” she said.
“You didn’t know if she was going to come out of the seizure.
“When you see a child go blue, it’s very confronting — especially when it’s your child.”
Two months after her first seizure, Ember had an EEG to measure her brain activity.
While she did not experience any seizures while being monitored, her parents had taken videos of her experiencing them previously and were able to get her diagnosed by showing them to her doctor.
“It’s very important to get videos,” Jacalyn said.
The young girl was given the maximum dose of medication, but it wasn’t helping and she began experiencing 50 to 60 seizures a day.
Ember was eventually admitted for an overnight EEG, when “thankfully but unfortunately” she had a number of seizures doctors could see. With such a high number of seizures per day, it was deemed unsafe for Ember to go home.
The family eventually made it home when Ember’s seizures had reduced to 15 to 25 a day, but would soon return to hospital.
“If Ember gets a common cold, her seizure threshold is significantly reduced,” Jacalyn said.
“We have to go to hospital to get an emergency high-dosage of her medication.”
Ember had undergone genetic panel testing when aged about 11 months, and it was while they were already in hospital that they received the results.
“We got the results after her first birthday,” Jacalyn said.
Ember was just starting to talk, saying Mama and Dada.
The genetic panel testing revealed Ember was living with KCNT1 epilepsy — a rare genetic case in which 25 per cent of babies are “given angel wings” within a year of diagnosis.
It will be one year since Ember’s diagnosis next week.
“We’ve spent a whole year thinking we might lose her,” Jacalyn said.
The family was told children with the condition generally don’t make it past their 10th birthdays.
“It’s a life-limiting condition,” Jacalyn said.
“The information pack said she’d never walk, talk, or eat on her own.
“To say we were devastated is a complete understatement.”
But Ember “defied the odds” and “blew them out of the park”. She began walking with a walker, continued talking and could eat.
She continued to develop for months, until a significant episode took that all away.
Ember lost her ability to eat and now has a feeding tube.
Aspirated-fluid then got into her lungs and she contracted a bacterial infection. She was in the PICU up to five times in nine weeks.
“She seized on and off for 32 hours straight,” Jacalyn said.
“It took away her ability to say the mamas and dadas.”
Ember can no longer walk or crawl and is a “newborn in a toddler’s body”.
“We’re starting from scratch,” Jacalyn said.
The toddler has to be monitored around the clock for seizures, and medication only serves to reduce them.
“Seizures are a daily part of our lives,” Jacalyn said.
When speaking to 7NEWS.com.au at 2pm, Ember had already endured 10 seizures that day.
“She needs around-the-clock monitoring because she can’t swallow her own saliva,” Jacalyn said.
“We have medical supplies in every room.”
Ember still holds her breath when she has a seizure, so the family has oxygen and CPR equipment in every room, too.
“Knowing that this is her life until she gains her angel wings is completely devastating,” Jacalyn said.
Facing the realisation she was going to lose her child was unbearable.
“I needed people to know that Ember was here,” she said.
Jacalyn decided to start sharing Ember’s story online and said she has received an “outpouring of love and support” ever since.
Her TikTok and Facebook pages have amassed a large following, as Jacalyn shares toothpaste tastings, physical therapy updates and more.
The KCNT1 foundation has also seen a 30 per cent increase in online traffic as a result.
Jacalyn wants to raise awareness of the condition and how devastating it can be.
“My life … everything has been changed by epilepsy,” Jacalyn said.
She hasn’t been able to return to her job as a nurse since giving birth to Ember and doesn’t think she’ll ever be able to.
“I can’t walk into a hospital without getting triggered,” she said.
One of the hardest parts is feeling like she’s Ember’s carer before her role as mother.
She sometimes finds herself looking at her daughter from a medical perspective first, rather than through a mother’s eyes.
Ember is currently in palliative care, and Jacalyn said they are trying to give her the best life possible.
Jacalyn and Joshua are working on a bucket list of things they want to do with Ember.
A Facebook group called Ember our love for you is so big it has reached… was created, where their community take photos around the world with messages for Ember.
Recent places the community has taken Ember include Canada and a Broncos game in Brisbane.
“She’s been to India, Bali, swimming with dolphins,” Jacalyn said.
“To Josh’s hometown five hours away, because we can’t take her there ourselves.
“Our beautiful community has taken her there.”
Epilepsy Queensland has also been a huge help to Ember’s parents.
They have helped educate their extended family through virtual and in-person sessions, and the couple can call for counselling and to be connected with people in similar situations.
“My sister has done education and learned how to administer medication,” Jacalyn said.
People from the organisation have met Ember multiple times and are actively involved with the family.
“It’s a community,” Jacalyn said. “We’re a family.”
March is epilepsy awareness month, with a national Make March Purple campaign.
On March 26, the International Day of Epilepsy Awareness, Jacalyn encourages everyone to wear purple in support of epilepsy awareness.
Funds raised during March contribute to free education sessions to help families understand and manage epilepsy.
To participate you can host an event, take on a personal challenge, “get mucked” for epilepsy, buy merchandise or donate.
Information can be found on Epilepsy Queensland’s website.