A Co Meath mother-of-two who survives on just four hours sleep a night, caring for her daughter is organising a fundraiser for a charity which she says had made a 'huge difference' in her life.
Tracy Carroll from Bohermeen is going 'Up the Hill for Jack and Jill' in an effort to highlight the work of the foundation and say thank you for all the support they've given her since she had two-year old Willow, who suffers from spastic quadriplegia cerebral palsy and epilepsy.
The Jack and Jill Foundation help Tracy with 50 hours nursing a month to give her a little break from the round-the-clock care that Willow needs.
Willow born in December 2016 was removed from life-support two days later and not expected to live but clung onto 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 a paltry €73 a week because her John is in full-time employment.
Tracy is also mother to a very energetic five-year-old Noah.
“No day is ever the same and we cannot plan forward or take anything for granted," said Tracy.
"Willow is PEG feed (needs feeding tubes) 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.
"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 finds it unfair and says the family are in a sense 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.
"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."
"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."
However, despite the lack of Government supports, Tracy counts her blessings every day for two very special Jack and Jill nurses in their lives.
"In the darkness, our guardian appeared - our angel, Anne Reilly who is our Jack and Jill liaison nurse who is now also a great friend.
"She came into chaos and calm descended when she made sense of what was happening and knew what we needed to do.
"Jack and Jill provide nursing hours to give us time as a family, time to do the simple tasks that we would have taken for granted before. The foundation provides unwavering support, friends and family.
"Every €16 donated to the foundation provides one hour nursing care. Every €16 gives a family like our own, time. Time to be a family. Time to take time."
- Up the Hill for Jack and Jill coincides with the Autumn Equinox and takes place at the Loughcrew Megalithic Cairns in Oldcastle on Sunday, September 22 at 12pm and comedian and actor Joe Rooney will also be on hand to lend his support. Register to take part here or donate on the day.