Lotte, born 10 weeks’ premature on July 1 to parents Ryan and Katie Moore, seemed a happy and healthy baby until she started having severe difficulty breathing three weeks later.

At just 33 weeks’ gestation, Lotte was flown from her hometown of Tamworth to the John Hunter Hospital in Newcastle, where it was discovered she was suffering from an incredibly rare cyst – congenital supraglottic cyst – that was blocking 90 per cent of her airway. 

Four operations later, Lotte and her mother remain in hospital – and the Tamworth community is rallying to help Lotte and her family celebrate her first Christmas together.

“She was going really well until she was about three weeks,” Mrs Moore told The Leader this week.

“Then she started having difficulties breathing. 

“They thought she wasn’t going to make it.

“They found she had a giant cyst in her throat that was occluding 90 per cent of her airway.”

What followed was an immediate surgery to remove the cyst.

“But three weeks later, it re-occurred,” Mrs Moore said.

Supraglottic cysts usually occur once. Lotte’s has now occurred four times.

Lotte is one of just 200 reported cases in the world living with the diagnosis, and the only paediatric patient.

As a result of the surgeries, Lotte has lost tissue around her larynx, lost a false vocal cord and part of her arytenoid, which means she has a nasogastric tube for feeding. 

Lotte’s first three surgeries were done via episcopic approach, but last Tuesday she underwent a fourth operation with the external approach, which involved opening up Lotte’s throat from the outside so the surgeon could ensure all areas of suspicion were removed.

“We’re waiting on pathology results because it’s changed in appearance now to what it was, it’s not really consistent with what the others (cysts) had been,” Mrs Moore said this week.

“It’s been absolute hell.

“Her breathing has just been so bad.

“She was only 33 weeks’ gestation when she was flown to Newcastle, she was so tiny.

“She was put on oxygen, had aspirated pneumonia but has recovered from that.

“It’s been setback after setback.”

Mrs Moore, who’s studying nursing at university, had never heard of congenital supraglottic cysts before Lotte’s was discovered.

“We just take it week by week now,” she said.

“It makes it so much easier that she’s a tough baby.

“They keeping saying that she’s got the fight, it’s a wonder she never thought it got too hard.”

While Mrs Moore has been with Lotte since three-weeks-of-age at John Hunter Hospital (JHH) in Newcastle, Mr Moore and their other children, Cruz, 10, Poppy, 4, Hendrix, 3, have been travelling back and forth between JHH and Tamworth for the past five months.

The family separation has been tough, and the financial costs associated with medical bills, travelling and accommodation are adding up.

Without the community help, the Moores will be separated for Christmas.

Family friends have rallied together to help the Moores spend Lotte’s first Christmas with her family.

A gofundme page has been launched – Lotte’s First Christmas – to raise enough money to cover accommodation in Newcastle for the family, travel expenses and any a little extra to make Lotte’s first Christmas a special one.

Mrs Moore said the community response had been overwhelming.

“We just want to thank everyone, especially all the businesses who have helped us or donated things, and everyone who’s been thinking of us,” she said.

“It can be lonely being here, but to know people are thinking of us is amazing.”

A bake stall will be held this Saturday, outside Target on Tamworth’s Peel St from 9am to 2pm, with all funds raised going towards Lotte’s medical expenses.

A Facebook page detailing Lotte’s journey has also been set up to share her progress with the community.

To donate to Lotte’s First Christmas appeal, visit www.gofundme.com/lottes-first-christmas