Amanda Fenn knew something was wrong when her 10-month-old son Ethan couldn’t sit up by himself. His three older siblings had all been walking by that stage, and Amanda was worried about why he was struggling.
At 11 months, Ethan looked thin – almost ‘fragile’ as Amanda put it – so she took him to see a doctor.
“They sent us to a pediatrician who just said, ‘Each kid develops at their own rate, it’s nothing to worry about, he’ll get there’,” recalls Amanda.
“But being a mum-of-three already I thought, ‘No, something’s not right’. So we decided to get another opinion.”
Despite being brushed aside by a second pediatrician, Amanda knew something was wrong and kept pushing for answers until Ethan was finally admitted to hospital.
A series of blood tests and urine samples revealed a potential problem with his kidneys, but when the diagnosis finally arrived that Ethan had cystinosis, a lack of explanation from the medical staff left Amanda in the dark about what it all meant – until she started doing some research of her own.
SCARY NEW REALITY
“We had to wait two hours [at the hospital] for the script to be made [for Ethan’s medicine] so I Googled it... and that’s when our world fell apart,” says Amanda. “The first thing I saw was, ‘Rare incurable genetic disease. Life expectancy, eight years old.’ I rang my husband at work and he broke down.
“I just held Ethan and said, ‘We’ll get through it together.’”
ãã®èšäºã¯ Womanâs Day Magazine NZ ã® May 25, 2020 çã«æ²èŒãããŠããŸãã
7 æ¥éã® Magzter GOLD ç¡æãã©ã€ã¢ã«ãéå§ããŠãäœåãã®å³éžããããã¬ãã¢ã ã¹ããŒãªãŒã8,500 以äžã®éèªãæ°èã«ã¢ã¯ã»ã¹ããŠãã ããã
ãã§ã«è³Œèªè ã§ã ?  ãµã€ã³ã€ã³
ãã®èšäºã¯ Womanâs Day Magazine NZ ã® May 25, 2020 çã«æ²èŒãããŠããŸãã
7 æ¥éã® Magzter GOLD ç¡æãã©ã€ã¢ã«ãéå§ããŠãäœåãã®å³éžããããã¬ãã¢ã ã¹ããŒãªãŒã8,500 以äžã®éèªãæ°èã«ã¢ã¯ã»ã¹ããŠãã ããã
ãã§ã«è³Œèªè ã§ã? ãµã€ã³ã€ã³
LIVING WITH LONG COVID
Whether you or someone close to you is suffering, the support you get will make all the difference
WENTWORTH STAR LEAH 'I FELT SO STRONG!'
The Aussie acting legend talks love, leeches, lifting weights and her new series High Country
TV STAR SAMUEL 'NO ONE GOES ON MAFS FOR LOVE'
The skincare entrepreneur has some advice for the new contestants
Khristian's RECIPE FOR LOVE
This contestant had to choose between his partner and the MasterChef kitchen
A YEAR WITHOUT JOCK 'WE WERE TWO HALVES'
It's been 12 months of milestones and missing the beloved MasterChef Australia judge
HUGH'S KIDS TELL 'WE'LL LOOK AFTER YOU, DAD'
While the actor struggles to find his feet after his divorce, Ava and Oscar are as worried as his fans
CAM'S BODY IMAGE BATTLE 'IT'S OK NOT TO HAVE ABS!
After years of being bullied when he was younger, the CTI star wants to help empower others
HOME AND AWAY CAST DIVIDED OVER NEW ROMANCE
Ada and James' love life is the talk of the town - and Summer Bay!
THE MOMENT CHARLES MADE ZARA A PRINCESS?!
The King is on a mission to give his niece a leg-up in the monarchy
BRAD & INES' ROMANCE HEATS UP!
Life was a beach for Brad Pitt and his girlfriend Ines de Ramon as they enjoyed a romantic stroll along the waterfront in Santa Barbara last week.