Jacalyn Kerr lives day by day understanding that any day her daughter Ember will “achieve her angel wings”.
That is the grim actuality Queensland household grapples with, as Ember’s uncommon type of epilepsy means the two-year-old can undergo as much as 60 seizures a day and requires an oxygen tank and CPR tools close by always.
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Ember was simply 9 months outdated when she had her first seizure.
Mother and father Jacalyn and Joshua wished their solely little one desperately, and went via fertility therapy to have her.
Previous to her first seizure, Ember was a contented child — till she wasn’t. The primary time she seized, it was completely out of the blue.
Her dad and mom rushed her to the native hospital Ipswichthe place they have been informed she’d had a “temporary resolved unexplained occasion (BRUE)”.
They might watch as she had a number of seizures over the following two weeks, earlier than getting her admitted to the Queensland Youngsters’s Hospital in Brisbane.
When the seizures have been taking place, Ember would maintain her breath and switch blue.
Jacalyn needed to watch on, helpless, as her daughter went stiff and suffered for as much as 5 minutes at a time.
“It’s totally traumatic,” she stated.
“You did not know if she was going to return out of the seizure.
“Once you see a baby go blue, it is very confronting — particularly when it is your little one.”
Two months after her first seizure, Ember had an EEG to measure her mind exercise.
Whereas she didn’t expertise any seizures whereas being monitored, her dad and mom had taken movies of her experiencing them beforehand and have been in a position to get her recognized by exhibiting them to her physician.
“It is essential to get movies,” Jacalyn stated.
The younger woman was given the utmost dose of treatment, but it surely wasn’t serving to and he or she started experiencing 50 to 60 seizures a day.
Ember was ultimately admitted for an in a single day EEG, when “fortunately however sadly” she had a variety of seizures docs may see. With such a excessive variety of seizures per day, it was deemed unsafe for Ember to go dwelling.
The household ultimately made it dwelling when Ember’s seizures had decreased to 15 to 25 a day, however would quickly return to the hospital.
“If Ember will get a standard chilly, her seizure threshold is considerably decreased,” Jacalyn stated.
“We have now to go to the hospital to get an emergency high-dosage of her treatment.”
Ember had undergone genetic panel testing when aged about 11 months, and it was whereas they have been already in hospital that they obtained the outcomes.
“We bought the outcomes after her first birthday,” Jacalyn stated.
Ember was simply beginning to speak, saying Mama and Dada.
The genetic panel testing revealed Ember was dwelling with KCNT1 epilepsy — a uncommon genetic case wherein 25 p.c of infants are “given angel wings” inside a yr of analysis.
It will likely be one yr since Ember’s analysis subsequent week.
“We have spent an entire yr considering we’d lose her,” Jacalyn stated.
The household was informed kids with the situation typically do not make it previous their 10th birthdays.
“It is a life-limiting situation,” Jacalyn stated.
“The knowledge pack stated she’d by no means stroll, speak, or eat on her personal.
“To say we have been devastated is a whole understatement.”
However Ember “defied the percentages” and “blew them out of the park”. She began strolling with a walker, continued speaking and will eat.
She continued to develop for months, till a big episode took that each one away.
Ember misplaced her means to eat and now has a feeding tube.
Aspirated-fluid then bought into her lungs and he or she contracted a bacterial an infection. She was within the PICU as much as 5 instances in 9 weeks.
“She seized on and off for 32 hours straight,” Jacalyn stated.
“It took away her means to say the mamas and dadas.”
Ember can not stroll or crawl and is a “new child in a toddler’s physique”.
“We’re ranging from scratch,” Jacalyn stated.
The toddler must be monitored across the clock for seizures, and medicine solely serves to cut back them.
“Seizures are a day by day a part of our lives,” Jacalyn stated.
When chatting with 7NEWS.com.au at 2pm, Ember had already endured 10 seizures that day.
“She wants round the clock monitoring as a result of she will’t swallow her personal saliva,” Jacalyn stated.
“We have now medical provides in each room.”
Ember nonetheless holds her breath when she has a seizure, so the household has oxygen and CPR tools in each room, too.
“Realizing that that is her life till she features her angel wings is totally devastating,” Jacalyn stated.
Dealing with the conclusion that she was going to lose her little one was insufferable.
“I wanted individuals to know that Ember was right here,” she stated.
Jacalyn determined to begin sharing Ember’s story on-line and stated she has obtained an “outpouring of affection and assist” ever since.
Her TikTok and Facebook pages have amassed a big following, as Jacalyn shares toothpaste tastings, bodily remedy updates and extra.
The KCNT1 basis has additionally seen a 30 p.c enhance in on-line site visitors in consequence.
Jacalyn desires to lift consciousness of the situation and the way devastating it may be.
“My life … all the pieces has been modified by epilepsy,” Jacalyn stated.
She hasn’t been in a position to return to her job as a nurse since giving delivery to Ember and does not suppose she’ll ever have the ability to.
“I am unable to stroll right into a hospital with out getting triggered,” she stated.
One of many hardest components is feeling like she’s Ember’s carer earlier than her function as a mom.
She generally finds herself taking a look at her daughter from a medical perspective first, reasonably than via a mom’s eyes.
Ember is at the moment in palliative care, and Jacalyn stated they’re attempting to provide her the very best life doable.
Jacalyn and Joshua are engaged on a bucket listing of issues they need to do with Ember.
A Fb group known as Ember our love for you is so big it has reached… was created, the place their group takes photographs world wide with messages for Ember.
Latest locations the group has taken Ember embody Canada and a Broncos recreation in Brisbane.
“She’s been to India, Bali, swimming with dolphins,” Jacalyn stated.
“To Josh’s hometown 5 hours away, as a result of we won’t take her there ourselves.
“Our stunning group has taken her there.”
Epilepsy Queensland has additionally been an enormous assist to Ember’s dad and mom.
They’ve helped educate their prolonged household via digital and in-person periods, and the couple can name for counseling and to be linked with individuals in comparable conditions.
“My sister has finished training and discovered administer treatment,” Jacalyn stated.
Individuals from the group have met Ember a number of instances and are actively concerned with the household.
“It is a group,” Jacalyn stated. “We’re a household.”
March is epilepsy consciousness month, with a nationwide Make March Purple marketing campaign.
On March 26, the Worldwide Day of Epilepsy Consciousness, Jacalyn encourages everybody to put on purple in assist of epilepsy consciousness.
Funds raised throughout March contribute to free training periods to assist households perceive and handle epilepsy.
To take part you possibly can host an occasion, tackle a private problem, “get mucked” for epilepsy, purchase merchandise or donate.
Data could be discovered on Epilepsy Queensland’s website.
