For most families, the days and weeks following the arrival of a new baby are filled with joy. But for one NSW family, the birth of their second son has been overshadowed with fear, confusion, and round-the-clock hospital care.
Born on February 15, Beau appeared to be a healthy and happy baby boy and a highly anticipated fourth member of the McClinton family. But within hours an MRI revealed a different story, showing a bleed on his cerebellum that had formed during pregnancy.
A 10-day hospital stay followed, with the McClinton's remaining by their newborn's crib around the clock. What they could never have known though, was just how much time they were about to spend in hospitals.
Less than two weeks after being discharged from his first stay, Beau was back in the hospital, this time being monitored for what doctors described as "seizure-like activity."
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The seizures are frequent and fierce and medication isn't working.
Nearly three months on, Beau's condition remains the same and in one day alone, he is still experiencing up to 40 seizures a day, with most lasting between seven to 10 minutes.
"Beau is certainly the little super hero of our family who has endured way too much for a 12-week old baby," Beau's aunt, Laura Funnell, wrote.
Now, after months of uncertainty, Beau was finally diagnosed with a rare drug-resistant form of epilepsy known as Ohtahara Syndrome last week. And while the McClinton's now have an answer as to what is plaguing their youngest son, the path forward to treatment remains perilously unclear.
In a bid to help the family continue to support Beau, Funnell has created a GoFundMe page with a goal of $30,000.
"I am hoping as a community we can raise much needed funds to assist the McClinton family with Beau’s uncertain future, that will consist of ongoing medical bills, therapy, in-home assistance to help with his 24 hour care, travelling and accommodation costs for ongoing reviews in Sydney and medical equipment so that he can live his life at home with his family," she writes.
Incredibly, just 10 days after launching, the campaign is just $5000 short of reaching Funnell's goal.
Funnell writes, "As my daughter, Myah says, 'We need to keep wishing on the stars to bring Beau home and make him better'."
To find out more about Beau's campaign or to donate, head to GoFundMe.
Top Comments
As a mother of a very long term NICU infant, who'll require home equipment and support, I'm surprised to read that many of the costs outlined aren't covered by the public health system. Travel and accommodation aren't of course. But there are also a number of assistance options Centrelink offers. Not to mention PPL, father/partner pay, carers payment, carers allowance.
I hope little Beau continues to grow stronger and surprise medical professionals. These wee ones are fighters.