Three weeks ago Shirley McKernan found herself racing along the freeway, her two youngest daughters on board and in a state of panic.

A respiratory infection was taking its toll on her disabled daughter’s breathing.

A disease that affects muscle development means Matilda needs a tracheostomy tube to breathe, the air she breathes filtered by a simple device known as a Swedish nose.

When she is well the filters last two to three days, but a viral infection can change that in hours, the phlegm and mucous clogging up her only access to oxygen.

It means even more vigilant care — an alarm monitors her vital signs and a suction device extracts the muck from the tracheostomy tube at 15-minute intervals.

It also means constant changes of filters, sometimes up to a dozen a day.

It really is a case of life and death but her mum has access to only 15 Swedish noses a month.

The council worker, 39, had only a few left.

“I was driving along the freeway to Albury in a state of panic,” Ms McKernan said.

“I had been to Wodonga hospital but they had no stock, been told by the Royal Children’s in Melbourne that I had used my April quota and would have to wait at least two weeks for the next batch.

“I had rung everywhere I could think of — she was getting sicker, I could see all the warning signs but no one could help.

“I just burst into tears, I couldn’t stop sobbing, I was all alone and Matilda was in trouble.”

Albury Base Hospital had three of the filters, the Royal Children’s came good with an early delivery and Wangaratta hospital provided an entire box.

The relief on Ms McKernan’s face is still visible two weeks after the incident, but it has also left her angry and frustrated.

“This is not a luxury item, it is something she needs to survive,” the 39-year-old said.

“The doctors and nurses on the Border have been fantastic with Matilda, they all know her, know her condition and needs.

“But I don’t think it is unreasonable that they keep a supply (of Swedish noses) on the Border in the case of an emergency like this.

“There is now another young child on the Border with similar needs.

“I don’t think that family should have to go through what we did.”

The mother-of-three said after Matilda’s birth their world was turned upside down in a day.

Her other daughters — Jessica, 13, and Adelaide, 18 months — are fit and healthy.

“In less than 24 hours Matilda was rushed to the Royal Children’s in Melbourne and she spent her first six months there,” Ms McKernan said.

“She is three now and still hasn’t been fully diagnosed — the doctors can say she has hypotonia, a disorder that causes low muscle tone, but can’t say what caused it.

“They have done biopsies but it all comes back normal.

“There is another little girl in France with a similar condition but not the same.

“It is frustrating but what can you do?”

The tracheostomy is a simple looking device that nevertheless makes you wince.

A narrow plastic pipe, hooks into the windpipe at the base of Matilda’s neck through a surgeon-created hole.

Another plastic portal in her stomach is a feeding conduit.

Care is 24/7, an emergency “trachy” and the suction device essential baggage for even a trip up the street for coffee.

But the Wodonga Council parks and gardens worker makes light of the workload.

“She is beautiful, she laughs and plays,” Ms McKernan said.

“The pediatrician didn’t really expect her to come home but she’s a fighter, each day she gets stronger.”

This week Wodonga Hospital agreed to talk with the Royal Children’s Hospital about maintaining stocks on the Border.