The community in Chorley is coming together for a fundraiser to help a little girl breathe.
Four-year-old Phyllisity Ramm from Astley Village has a condition which means she stops breathing about 90 times every night.
Her mum Kylie Purkis, 29, is hoping to raise funds to pay for a special machine to monitor Phyllisity’s breathing by hosting a fun day.
“Phyllisity has Central Sleep Apneoa so she stops breathing about 90 times every night,” said Kylie, who is also mum to Daniel, 10, and Joseph, six.
“At the moment I probably get about an hour of sleep a night because I have to watch her all night in case I need to give her oxygen or perform CPR.
“The machine would allow me to sleep because it would monitor her. An alarm would wake me up because it goes off when her heart rate or oxygen levels go down.
“Sometimes my partner stays for a couple of nights and my mum also stays to help monitor her sleep.”
When Phyllisity was a newborn Kylie had to watch her round the clock because she had to revive her regularly.
Since then an Oximeter machine from the NHS with probes which attach to Phyllisity’s feet has monitored her breathing as she sleeps, alerting Kylie when her little girl needs oxygen or when she needs to resuscitate her.
But now, following complications with the availability of the NHS machine Kylie is not able to keep it and is fundraising to buy one herself.
She said: “It costs £800 for the machine but it’s the probes that are the issue really - they cost £398 for 24 single use probes - so one a night.
“I do try and make the probes last longer but they don’t always work as well if you reuse them.
“The probes that attach to her feet have run out so I’m now sat by her bed every night.
“We have been able to manage her at home quite well with the machine because my background is in nursing but now they have decided to take the machine away.
“It is sleep related so she doesn’t struggle as much when she’s awake but she can’t run around like an average child.
“If she tries to keep up with other four-year-olds it doesn’t go well.”
After Kylie moved from Nofolk to Lancashire she has found herself caught in a bureaucratic nightmare as the NHS trusts have different policies.
Kylie’s partner Adam Nicholls said: “We are fighting and will continue to fight the decision to take the machine away as not only does it put Lissy’s life in danger but also affects Kylie’s health due to not sleeping and the untold stress being caused by this situation.
“Lissy’s brothers David and Joseph are also beginning to suffer.”
When asked, Lancashire Teaching Hospitals NHS Foundation Trust did not comment directly on the situation.
Medical director of the Trust Gerry Skailes said: “We always aim to provide the highest standards of safe, effective and appropriate care to our patients.
“If anyone has any concerns about the care we provide, or changes to treatment, they should speak with their clinician and we’ll work together to resolve the issue.”
But despite the set back Kylie has decided to take control and now a fun day to raise the money for the new machine and probes is planned for Tuesday, April 3 at Astley Village Community Centre between 12pm and 3pm.
Kylie said: “There’s going to be lots of exciting things for children and adults to do including raffles, a tombola, a dance group, games, a children’s entertainer, face painting, tattoos, hair braiding and much more.”
To donate through a PayPal account email firstname.lastname@example.org and to find out more about the fun day fundraiser see facebook.com/phyllisityspromise