Kindness of strangers helps family stay positive as 3yo prepares to be bone marrow donor to save brother – ABC News

As the lives of most Australians were being turned upside down because of a global pandemic, Alicia Carey's life came crashing down for another reason.

In March, her 18-month-old son Henley was diagnosed with mucopolysaccharidosis or MPS, a rare and incurable genetic disorder that will eventually cause his major organs, bones, and connective tissues to deteriorate.

"Intellectually, he's pretty good," Ms Carey said.

"His main symptom is that he's a little bit behind in his physical development he's been getting around commando for a long time but he's up on all fours now.

"He doesn't have any problems with his heart or his lungs but it's what happens down the track."

Thankfully, Henley is not in any pain.

"He's a very happy little boy and he's pretty resilient," Ms Carey said.

Since the diagnosis, Ms Carey and Henley have spent a lot of time in Sydney for tests and treatment, leaving husband Sean and three-year-old brother Darcy to hold the fort in Coolamon.

"There's been so much uncertainty," Ms Carey said.

"It's been test after test, some surgeries, to work out the best treatment for him."

It's big brother Darcy who holds the key. He's set to donate his bone marrow to Henley on Thursday morning.

"A bone marrow transplant protects Henley's cognition," Ms Carey said.

"It can't reverse the damage that's been done but it can give him better quality of life and a longer life.

"We obviously did a lot of thinking about it because it's very risky and there are a lot of things that can go wrong, especially because of his disease.

"But we know it's the best thing for him."

The recovery for Darcy will be quick he's expected to be up and about by Thursday afternoon.

But Henley won't be so lucky.

"He will have had 10 days of chemotherapy before the transplant and we've been told he'll be at his worst two weeks after the surgery," Ms Carey said.

"He'll be in intensive care and probably need ventilation so they've prepared us for that.

"And then, if everything's going well, he'll be in isolation in hospital for three months, which will be so hard."

Mr Carey and Darcy will visit on weekends but ultimately the family will be split between Sydney and home, and Ms Carey a nurse has not been able to work for months and will not be able to work for some time.

Anticipating the financial burden this would bring the family, Ms Carey's mother, Margaret, started a GoFundMe page, which has raised almost $17,000.

"My mum and cousin send through the names of people who have donated and a lot of these people are complete strangers," Ms Carey said.

"To think our story has touched people's lives so much that they're willing to help us out is completely overwhelming.

"We're so appreciative of all the support we've received because that has been one of the biggest stressors what happens to our bills and mortgage with me not working and living in Sydney?"

With the transplant looming, Ms Carey said the family was feeling positive and hopeful.

"I come from a medical background so it's really hard being on the other side," she said.

"I don't think we've even processed what's about to happen but I think one thing that keeps us going is knowing this is the best thing that's available to Henley.

"It buys him time to wait for something else that might be available for MPS in another five or ten years.

"It's going to be pretty tough but, for now, we're just hoping to be home by Christmas."

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Kindness of strangers helps family stay positive as 3yo prepares to be bone marrow donor to save brother - ABC News