Maryborough toddler Sean Sandeman loses brave battle with rare disorder

The shattered mother of one of six children in Australia to battle a rare condition says he was the bravest person she will ever know, after he died in her arms at the age of two.

Shelley Sandeman with her son Sean.

Like most other two-year-olds, Sean Sandeman loved music and cartoons, especially Bananas in Pyjamas.

He loved sitting on a swing outside his house, visiting the beach and the park and all kinds of sea life, but especially turtles and dolphins.

But Sean was facing an illness no child should have to face, a rare form of untreatable epilepsy that would claim his life at just two years and three months old.

After a funeral was held for the loveable toddler in Maryborough this week, his mother Shelley wanted to share his story and pay tribute to her brave boy.

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Sean was the third child welcomed by Shelley and Clint in what Shelley described as the healthiest of her pregnancies.

But one day after he was born at Dalby Hospital, he had his first seizure.

Shelley said she didn’t know what they were or what was happening to Sean, but it was clear something was wrong.

Sean was flown to the Royal Brisbane and Women’s Hospital where, for five weeks, answers eluded the doctors who were treating the newborn.

Sean Sandeman fought a brave battle with WOREE syndrome, a rare neuro-developmental disorder featuring drug-resistant epilepsy and global developmental delay.

From MRIs to blood tests, ECGs and X-rays, Shelley watched as her baby endured tests that left them no wiser as to what they were facing.

At three weeks, Sean had to be intubated for the first time after a particularly severe seizure.

But his tests kept coming back normal.

At five weeks, Clint and Shelley underwent genetic testing, which revealed a gene abnormality in herself and her husband.

While harmless for them, it meant their children had a one in four chance of having a condition known as WOREE syndrome, a rare neuro-developmental disorder featuring drug-resistant epilepsy and global developmental delay.

Sean was one of only six children in Australia to be diagnosed with the syndrome.

Only a very specific type of test could have led to Sean’s diagnosis, Shelley said, and only 100 children worldwide were known to have the syndrome.

When sitting down with the doctors and specialists who were treating Sean, his family was told heartbreaking news.

Clint Sandeman with his son, Sean.

Children with the syndrome had a life expectancy of no more than four years and as it could not be treated, the focus would be on managing Sean’s symptoms.

It was not Sean’s disability, but his life expectancy that broke Shelley.

“My heart shattered,” she said.

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No one had epilepsy in either her husband’s family or her own family, Shelley said.

Because of his illness, Sean had to spend long stretches of his life in hospital.

Even a typically minor illness like a cold could cause major health issues.

But in many ways, he was still a typical toddler.

When Clint would play the guitar, Sean would dance.

When he was having a bad day, Shelley would put on Bananas in Pyjamas and it would always make him smile.

“He was so strong,” she said.

The Sandeman family at Sea World on the Gold Coast where Sean got to see the dolphins.

“He was the bravest and strongest person I’ll ever know in my life.”

During his short life, Sean was intubated five times.

“Any tiny little germ, he would get it 10 times worse than other people,” Shelley said.

Sean spent his first birthday in hospital with Covid and his family weren’t sure if he would survive, but he made it through.

“He tried so hard to stay as long as he could,” Shelley said.

“Unfortunately, with his condition, time was not promised.”

Eight months ago, as Sean’s conditioned worsened, the family focused on packing as much in as they could.

The family was taking videos and photos that would provide them with a lifetime of memories.

But when Sean went downhill at the start of last year and went into Hummingbird House, a children’s hospice, the team there helped make arrangements for Shelley and Clint to get married on February 5, 2022, with Sean as their ring bearer.

Sean grew stronger and two weeks after the wedding the family was told they could take him home to Maryborough.

“It wasn’t his time yet,” Shelley said.

That meant the Make a Wish Foundation could fulfil Sean’s dream of seeing the dolphins on the Gold Coast, Shelley said.

In the meantime, having become pregnant with her fourth child, Shelley had to undergo an amniocentesis to screen the new baby for the genetic disorder.

Sean Sandeman was diagnosed with WOREE syndrome, a rare neuro-developmental disorder featuring drug-resistant epilepsy and global developmental delay, when he was five weeks old.

When she learned her child didn’t have it, “I cried”, Shelley said.

In his final week at home, Sean began receiving palliative care.

He had become tired and was in constant pain, so his treatment was focused on making it easier for him to breathe and to rest in comfort, Shelley said.

Sean died in Shelley’s arms in the lounge room of their home on June 30.

He had spent his final week surrounded by all the things that he loved, music, cartoons and cuddles, going for walks and sitting on the swing outside his home.

“He was such a beautiful boy,” Shelley said.

“We feel so very empty without him.”

But she was grateful for the eight extra months the family had been blessed with, she said.

For Sean’s funeral this week, the themes were easy – Bananas in Pyjamas and sea life, with Sean’s favourite toys resting with him in his coffin.

“We will miss Sean very much,” she said.

“He touched a lot of lives.”