Declan, 10, who was born with Apert Syndrome with his sister Amelia giving him a drink in an Adelaide Hospital after his intra-cranial monitoring procedure.
Declan, 10, who was born with Apert Syndrome with his sister Amelia giving him a drink in an Adelaide Hospital after his intra-cranial monitoring procedure. Contributed

Declan's fight to cope with genetic disorder needs our help

IT'S been a tough 10 years for Kiara Searby and her son Declan.

Born with Apert Syndrome, Declan has undergone multiple surgeries to release his fused fingers - which he's unable to bend - and lives with fused shoulders and toes.

The genetic disorder impacts an estimated one in 65,000 to 88,000 newborns and is characterised by the premature fusion of skull bones which affects face shape and can cause increased cranial pressure.

Twice a year Declan must visit the Australian Craniofacial Unit in Adelaide for between a week and a month, with his last visit costing close to $5000 in medical expenses, travel and accommodation as the Year 4 student needed an intra-cranial monitoring procedure.

 

Kiara Searby and her son Declan, 10, who was born with Apert Syndrome.
Kiara Searby and her son Declan, 10, who was born with Apert Syndrome. Contributed

Declan's neurosurgery team had to drill into his skull to place a monitor inside to measure the pressure inside over 48 hours, which was found to increase when he was sleeping.

The Beerburrum mother-of-four is reaching out to the community through Gofundme to help raise money for the next step of Declan's journey, a sleep study requested by neuro specialists to determine if her son's next big surgery - a mid-face advancement - is needed immediately or in a few months.

The surgery will see Declan's mid-face brought forward to help increase the size of his airway and ease pressure in his skull, with up to eight weeks recovery time.

Unfortunately, the family's health insurance company is refusing to pay for the study and local sleep clinics won't take him on either.

The Mater Private Hospital has agreed to do the basic procedure, at a cost of about $1000.

"I have had a couple of people send me messages of 'why don't you go get it done publicly?'," Ms Searby said.

"Yes we have a great health-care system in Australia, but the public waiting lists are huge and it could be next year until he would actually get a spot to have a sleep study."

The support Declan's received so far has amazed his devoted mum.

"Even waking up this morning and looking at it (the Gofundme page), it's just absolutely heart-warming to see there are people out there who are willing to help a cause," Ms Searby said.

"It's not something we would do if we didn't have to."

The family also owe a lot to Delcan's school, Glasshouse Christian College, which Ms Searby said "has been a massive part of who he is today".

"They're an absolutely amazing school, they've been so supportive," she said.

Ms Searby said the study - which is booked for next Friday night - is just the next step towards surgery that will improve her son's quality of life.

"We'll basically do what we need to do between now and then to have the money there," she said.

"If he doesn't have the surgery, basically the brain is trying to grow, the pressure builds up, the skull can't more.

"Brain damage or death is the two (outcomes)."

At the time of writing the Gofundme page had raised $675 of $5000 needed to cover not just the cost of the sleep study, but some ongoing medical costs.

You can help Declan here.



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