Online fundraiser launched for 'inspirational' Leitrim baby

Aria Rose is a 1-year-old severe complex needs baby that has spent her entire life to date in hospital with only 12 short days at home, between Holles Street, Sligo, Crumlin and Temple Street hospitals.

She was born two months premature to her doting parents Shane Barry (Ballygawley) and Tracey Wilkie (originally from Donegal), who now live in Edergole, Dromahair, Co Leitrim.

Aria Rose was only expected to live for 2-3 months. Her family was strongly advised by her medical team to turn her oxygen supports off at only 6 weeks old once they learned of her syndrome and conditions (hydrocephalus, polymicrogyria, six holes in her heart, compact cardiomyopathy, a dysplastic kidney, hypotonia and a rare genetic condition called cri du chat plus).

Her parents have explained their story in their own words:

“With one squeeze of our finger from her tiny premature hand we knew it was a sign from her saying Hold on, I’m a fighter, don’t let go “so we trusted in her, we held on tight for a fight and that is what she did. We were told that she would never interact with us, she would never have the function of her limbs, she would never suck, breathe or swallow, walk or talk and never think for herself, on that note we were transferred to our local hospital in Sligo. On arrival Aria Rose did more than thrive, she grew bigger and stronger and miraculously mastered drinking her bottles and soon came away from NG tube feeds. She got covid and beat that no problem, then went on to Crumlin to convince a board of nine surgeons that she deserved the chance of a better life and qualified for heart surgery (PDA closure, 1 of the holes in her heart) that improved her quality of life highly and on the same admission she receives her VP shunt in her brain, that all went very well. Aria then came home for the first time in 8 months, sleeping, eating and showering on the ward every day and night and the support of charity houses such as Hugh’s house and the Ronald Mc Donald house, excitement was an understatement.

"We got home on the last week of June but unfortunately it only lasted six days, when Aria Rose got ill with rhino entro virus and had to be Garda escorted by ambulance to Crumlin where she spent 48 hours in critical condition on a ventilator, we expected the worst fears and prayed hard for her to yet once again show everyone her fighting spirit and the power of prayer. She did, three days later she started to pull through and was newly named the magic baby by another amazing child going through her own battles too, it caught on and it stuck, the magic miracle baby was soon home again.

"To our disheartenment, only for six days again, on our sixth day home again Aria Rose took unwell from aspiration pneumonia and we were transferred to temple street PICU ward and then transferred back to Crumlin to have surgery for a peg feeding tube into her stomach and trail pressures on a bipap ventilation system for home use once she was stable, third time lucky we are hoping, unfortunately, Aria Rose suffered some more damage to her heart from three cardiac arrests, rhino entro virus and aspiration pneumonia all within the space of two months and had a recent visit to PICU again.

"Currently we are still in Crumlin and hoping to get home again soon. Aria Rose has defied all odds and is teaching a lot of us to see the world differently. She has a purpose on this earth and she is proven she is worth every minute she is here in our lives, she really is a magic miracle baby and has brought so many people together from all over the world in prayer for her and we are forever grateful for that, she is our HERO, HOPE and INSPIRATION. We would love for the world to know of her and learn that were there is life, there is hope

"Please help us get Aria Roses's story out to others in the hope it can be of some comfort and strength to anyone going through a tough time and show the power in people brought together to help bring Aria Rose home xx”

In order to make the family's dream of having Aria Rose home, a special online fundraising page has been set up.

Thomas Walsh, one of the Committee members said “we have put together a GoFundMe to help give Aria Rose the best life possible. Our community is rallying to support Shane, Tracey and Aria Rose and hope to raise funds to support the family. Shane and Tracey haven’t worked since Aria Rose was born. Aria Rose will have lifelong medical needs and will need extensive therapy and equipment, along with adaptions to every aspect of Shane and Tracey`s lives. A home extension for an accessible bedroom and wet room, adapted car/van, rehab equipment will all be required. This is not to mention ongoing travel costs, accommodation and treatments on going."

Donations can be made via Fundraiser for Aria Rose Wilkie Barry, organized by Thomas Walsh