Mum-of-three, Kylie Purkis gets about one hour of sleep a night. She sits up watching her 4-year-old daughter, Phyllisity Ramm who can stop breathing up to 90 times a night.
The little girl has a condition called sleep apnoea, which means that she often stops breathing in her sleep. The disorder occurs when your brian doesn't send proper signals to the muscles which control breathing.
She needs to be closely monitored and often has to be resuscitated by her watchful mother.
When Phyllisity stops breathing, Kylie has to bring her around again before she starts to turn blue.
"If she is floppy I will have to fight to bring her round. I have to administer oxygen around three times a week and give her CPR around once every three months," she told The Daily Record.
"I hate bedtime. It's terrifying."
Until last month Phyllisity was attached to an Oximeter machine every night. This measured her heart rate and blood pressure, alerting her mother if the levels dropped.
Thanks to the machine, Kylie was able to sleep more, only waking when the alarm sounded. However, this machine has been taken away from them.
In October, they were informed that Phillisity no longer required the Oximeter and was instead to be given a breathing monitor used for neonatal babies.
Kylie is distraught and is currently fighting to get the old machine back.
"I don't understand it," said Kylie. "I've not had a proper medical explanation as to why we are losing the machine.
"It is expensive, it costs £800 for the machine but it's the probes that are the issue really - they cost £398 for 24 single use probes, that is £6,000 a year.
"I have two other children who need me, I've had to give up work. They do not realise what they have done to my family by taking this away."
According to the exhausted mother, the neonatal monitor is completely inappropriate for an active 4-year-old.
"That machine is made for newborn babies who lay still. I have an active four year old who tosses and turns in the night.
"We used this machine until Phyllisity was one and it was a struggle to use it then. I am so upset Sheffield Children's Hospital have made this decision, they were so helpful in the beginning and now it feels like a kick in the teeth.
"When Sheffield Children's Hospital do their tests they are in a controlled sedate environment. Phyllisity has a much harder night when she's had a busy day - been to nursery or been on a family day out - their tests don't see that."
The family hope to raise enough money to buy the Oximeter machine themselves, by fundraising through Facebook.
"I refuse to give in for Phyllisity. We need this machine to keep Phyllisity alive and I will do whatever it takes to save my daughter."
