Parents of children reliant upon ventilators are being asked to reuse vital parts after the demand caused by COVID-19 created a shortage.
Maisie Lossau, 15, has needed the equipment day and night following surgery to remove a brainstem tumour four years ago.
But when her mother, Dawn, put in an order for supplies she was told there were none to send.
“We have a very small piece of equipment which is called an HME, which is a humidification valve, changed every day.
“When we went into lockdown we were told there was a shortage of those and we would have to change them on a less regular basis… once a week maybe or twice a week if we could.
“If that gets too wet, too damp, and we don’t change it, it becomes a breeding ground for germs.”
The danger then is infection.
There are more than 3,000 seriously ill children like Maisie across the country and the charity WellChild says supplies must be ring-fenced for them.
Its clinical director of programmes, Tara Parker, said: “There are things like the Nightingale Hospitals, unprecedented numbers of new ventilator beds put into temporary hospitals, which all need fully stocking and supplying so due to COVID we believe that those parts have come in really short supply and that is having direct effect on very vulnerable families.
“WellChild would urge the government and NHS to consider ensuring that all of these families get the vital supplies they currently need and to ensure they have a protected supply of these essential items.”
There is particular concern about the coming winter months, which always pose greater risk of infections and this year will have the added pressure of a possible second spike of coronavirus.
For Dawn, from Spixworth in Norfolk, that is a particular concern.
“This isn’t something that’s happening during a pandemic. This is our life, this is every day for us,” she said.
“We’re over the first wave, is there going to be a second wave? I don’t know.
“At the moment we are still scrabbling around for supplies and relying on people finding the odd one spare that we can use but when we run out what happens then? My daughter will end up being taken into intensive care.”
It is something Maisie really does not want.
“I was in hospital recently for an MRI [scan] and that was horrible,” she said.
A Department of Health and Social Care spokesperson said: “We understand how challenging this period is and we are doing everything we can to support patients, led by clinical advice.
“COVID-19 has caused a significant increase in demand for clinical consumables and has disrupted international supply chains.
“We have put in place a range of measures to address these challenges, including making it easier for clinicians to report shortages and identifying opportunities to open up new supply options and using additional brands.”