The devoted parents of a baby with a rare condition have told how they are facing an agonising wait to bring her home from hospital.
Little Evie Nolan, has a rare condition called a cystic hygroma on the left side of her face, causing her face to swell and fluid-filled sacs to form.
The five-month-old's airway was compressed and she had to undergo an emergency tracheotomy at birth.
Evie cannot breathe by herself or cry out because of the tracheotomy and she needs round-the-clock care.
Due to her complex needs, parents Ciaran and Katie still haven't been able to bring her home to Co Carlow.
The tot is currently in Our Lady's Children's Hospital in Crumlin in Dublin and cannot be discharged until a home care package, including specialised equipment and a nurse to care for Evie seven nights a week, is finalised.
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Ciaran and Katie have had to stay in the Ronald McDonald house to be near Evie, forcing them to be away from their older daughter Aila, six.
Katie explained that delays in finding a nurse mean the family are left in limbo.
She said: "Unfortunately, the agency doesn't have enough nurses to cover our homecare package which is extremely disappointing as the package was out to tender highlighted as an immediate start.
"This means more nurses still need to be recruited, garda vetted and any refresher training to be carried out.
"It's unknown how long this will take. We have been in Crumlin since December 5th 2018 and we've been waiting to go home for over seven weeks now and just when we thought we were close it has again been put on hold."
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Dad Ciaran, 31, told The Irish Sun: "Evie was born with cysts underneath her skin on the left side of her face.
"Some big, some small and it’s not as easy draining the cysts because they can fill back up, so she’s going through a couple of different treatments.
"She has cysts blocking her upper airway so she’s fitted with a tube to help her breathe.
“The cysts come from the left side of her cheek, and behind her left ear and they come right around under her chin.”
The tot's condition was discovered when Katie was 20 weeks pregnant and medics warned that Evie might not even survive to birth.
Evie is now receiving sclerotherapy treatment at present and doctors hope to start her on a drug called Sirolimus, however, this will be very tough on her immune system and may result in more hospital stays.
Ciaran's sister Tricia has launched a GoFundMe appeal to help the family with their ongoing expenses which has raised over €11,000 so far.
Katie said: "This GoFundMe gives us a chance to not only support each other once we get home full time and all the daily tasks involved with tracheotomy care but we can be a family of four.
"The excitement of a new baby was taken from us. The excitement of a baby sister was taken from Aila.
"She has lived without us for months. She has been to school in Crumlin and then school at home. Her life has been turned as upside down as ours.
"So from the very bottom of our hearts - thank you for the support."
For more information or to make a donation, click here.
