GoFundMe campaign for baby Azai Barron following KCNT1 diagnosis
A Queensland family of four have opened up about their nine week old’s shocking diagnosis, and grim timeline.
Family Health
Don't miss out on the headlines from Family Health. Followed categories will be added to My News.
Just three days after celebrating the momentous birth of her second son, Brittany Barron noticed something strange.
“He would have episodes of jolting movements lasting around 10-20 seconds,” she said.
Thinking that her son Azai was just having a bad dream, she sent a video to her midwife in the hope that it was just “normal baby behaviour” but they quickly decided that wasn’t the case.
Ms Barron and her husband Logan Stibbards quickly took their son to the Mackay Base Hospital and Azai began having another episode in ED, so they were rushed in and seen right away.
Initially, Mr Stibbards and Ms Barron were going to be sent home with doctors thinking that it was again, “just normal baby behaviour and he would grow out of it”, but after several relays with the Brisbane Children’s Hospital and an electroencephalogram, scans revealed their worst nightmare.
“The EEG showed seizure activity and things got serious from that moment,” Ms Barron said.
On Monday, nine-week-old Azai was diagnosed with the KCNT1 gene, a gene that involves mutations that can lead to various epilepsy syndromes, including epilepsy of infancy with migrating focal seizures.
With no medication able to stop or control his symptoms, Azai suffers from around 20 to 30 seizures a day lasting up to one to four minutes at a time.
“We have tried seven different medications and we are about to try our eighth,” she said.
“Azai is currently taking three different medications twice a day and we still do not have control of the seizures.
The only thing we can do for Azai is keep trying different medications and hope that we get some seizure free time, however with his condition, medication is known to not work.”
Friends of the family Samantha and Demi McNeil put together a GoFundMe campaign to help raise money while the family of four come to terms with the devastating reality that they’re faced.
After just one day, the pair managed to surpass their goal of $15,000.
As a result of the diagnosis, Azai will need 24/7 care as he faces neurological disabilities that the family will need to cater for as he grows. But Azai only has a life expectancy of up to 10 years with a 50 per cent chance of passing away at three years old.
Ms Barron said the new diagnosis was still very new to the family and that they were still coming to terms with the fact that their lives will change dramatically.
“My partner has had time off to care for our other son who is 2.5 years old as I have had to be in hospital with Azai,” she said.
“We hope that Azai can live a good quality life and gets to make many memories with us and his family.
“We are yet to reach out to other families as this is all still new to us and still trying to process the news.
“Once we are ready we might look into speaking to other families that have gone through this or similar conditions.”
More Coverage
Originally published as GoFundMe campaign for baby Azai Barron following KCNT1 diagnosis
TV presenter reveals his response when told he had 3 months to live
Barry Du Bois opens up like never before on how he spiralled into the darkness of depression – and came out the other end – after going through things that would break most people.
Anorexia shock: ‘I thought my daughter was too young’
When 11-year-old Abby started skipping and obsessively exercising, her mum couldn’t ignore the warning signs. See the check list.