A Meath mum who survives on just four hours sleep a night as she provides 24-hour care for her daughter has called for reforms in the next budget to recognise the roles of full-time parent carers.
Tracy Carroll from Bohermeen had to give up her job to give round-the-clock care to her two-year-old daughter Willow who suffers from spastic quadriplegia cerebral palsy and epilepsy.
The toddler who was born on 1 December 2016 was removed from life-support two days later and not expected to live.
At just four days old, Tracy and her husband John took Willow home under palliative care but the newborn fought for her life and survived.
However, her complex condition means that Tracy survives on just four hours sleep each night, drives her daughter to various health appointments and is entitled to just €73 a week because John is in fulltime employment.
Tracy is mum to five-year-old Noah who also needs her love and attention.
“No day is ever the same and we cannot plan forward or take anything for granted," said Tracy.
"Willow is peg fed and due to her epilepsy and other complex issues is on seven different medications, which are administered three times a day.
"With the peg feed and medications, free time is limited and so it can be hard to leave the house.
"I go to bed about midnight and most days and must get up again at 3am when her peg feed is complete.
"If Willow is settled she'll sleep until five and then I have the medication ready to go again at 6am as well as prepare her next peg feed.
"Between dropping Noah off to school and bringing Willow to various medical and physio appointments in Cavan, Navan or Dublin, the days can be demanding and pressured.
"We always aim to be home again for another round of medication at 1pm."
Tracy says the family feel as though they are being penalised by the State.
"We have been paying PAYE contributions in one way or another since we were both 16 years of age and now that we have a genuine need for support, the system is not in our favour.
I fought for the €73 a week I get for Willow, which doesn't even add up to the diesel I spend driving her to appointments.
"It's time the government looked at the real value of parent carers and the thousands of euro that we are saving the state.
"We should be allowed the right to be employed and awarded the same rights as everyone in the workforce, fairness for all and proper assessment of needs."
Tracy said she has been engaging with Meath Fine Gael Deputies Regina Doherty and Helen McEntee who have been "hugely supportive".
Willow depends on me and will depend on me for her entire life and every aspect of her care.
"The small things we take for granted are just another challenge for her.
"Willow is a child and deserves the same opportunities afforded to all children - to be allowed to enjoy what stimulates her and helps her progress - but these opportunities and rights have been removed because the government are not supporting a carer."
Tracy has just one message for the Government.
"Recognise my role as a carer. Allow me the right to PRSI and a pension and trust me, I'll continue to work my ass off, earn my wage and never pull a sicky.
"I'll do myself proud and be a model employee."