By Dewi Sherry
At just 15 years of age, Wyndham Vale’s Nathan Bisser has spent three quarters of his life in hospital, undergoing surgery 67 times.
Nathan has Charge syndrome, which is a rare, genetic disorder that comprises several common features including coloboma, heart defects, genital abnormalities and ear abnormalities.
Amid Nathan’s medical struggles, when he was just two years old his father died, leaving his mother Maureen a single mum and sole carer.
This year, Nathan took a turn for the worse and was rushed to hospital.
What was supposed to be a routine heart surgery turned into a five and a half hour ordeal, and it was discovered that Nathan’s heart was failing. His mother was told that Nathan’s body was slowly shutting down.
“It has not been a good year. Nathan’s heart is failing. It’s quite devastating, I’m crying every day,” Maureen said.
“The condition doesn’t give people long to live so Nathan goes day-to-day with not knowing how long he has.
“It’s hard to watch him slowly deteriorate, he is not the same little boy that he was last year. I was told yesterday that it’s not going to get any better, it’s only going to get worse.”
Nathan needs day-to-day care to help him communicate, walk, eat, change clothes and take medications. He now has two additional carers, Bec and Daniel.
“Nathan’s condition affects every part of his body. He now has half a heart, half plastic, which means his heart has to work a lot harder so he can’t do a lot of things that every other kid can,” Bec said.
Nathan has been bedridden since the end of last year and has lost a lot of muscle tone and the ability to hold himself up and walk. At the moment it takes the two carers to properly support him when walking.
He now communicates through signs only his carers and mother know.
In September, Nathan, his mum and carers were meant to go to Queensland for a holiday but Nathan ended up in ICU a week before they were due to leave. Complications with Nathan’s heart meant he was unable to fly.
Maureen has been told numerous times this year that Nathan may not live much longer. She has asked Bec and Daniel to develop a bucket list for him.
“Nathan is obsessed with Mickey Mouse and we’d love to get him on a plane and into another country. We’ve decided to take him to America to go to Disneyland,” said Bec.
For the trip to be successful Nathan needs to bring his two carers, requires oxygen to be around him at all times and needs to bring a lot of other equipment, which creates a very expensive trip.
“He’s a strong little dude, they didn’t think he would make it past a day, let alone 15 years,” Maureen said.
His carers have created a GoFundMe site to raise $10,000 to help Nathan get to Disneyland.
“We’re hoping Nathan can have this experience before he goes. It would be something that would stay with me for a very long time,” Maureen said.
To support Nathan, visit www.gofundme.com/4e19xr4