'Joey couldn't breathe' - Offaly mum of boy in fundraiser gives heartbreaking health update

The mother of Joey Conway, the two-year-old at the centre of a heartwarming fundraiser to get him potentially life-saving treatment has given a health update after a rush to hospital.

Joey Conway is only two years of age and needs major surgery for a life threatening condition. He was diagnosed with a rare condition called non-cirrhotic Portal Hypertension which has life-threatening symptoms and the risk of death is 40% on a first episode of bleeding.

A fundraiser to get Joey to Chicago for treatment has received national attention and so far over €140,000 has been raised for the Tullamore family.

Joey's parents Natalie and Tommy have been updating people on Joey's story on their 'Join Together For Joey' social media accounts. 

On Friday morning, Natalie posted a heartbreaking video update about a late night dash to hospital in Tullamore with Joey on Wednesday, just hours after the tot and his parents were pictured with the Laois and Offaly football teams before their O'Byrne Cup clash in Stradbally.

"After a short but lovely meeting with the Offaly and Laois teams Wednesday night, our reality bites us back! We had to ring an ambulance at 9.45pm, Joey couldn’t breathe," Natalie said.

"We were alarmed like always to a cough but this sound was different. I ran up the stairs and immediately heard Joey struggling to catch his breath. I whipped him out and we ran downstairs, we knew we needed help immediately.

"We thought is this another sepsis? Is this the signs of the dreaded bleed or what is going to happen? A bit of Deja vu for Joey and I, we were in an ambulance to A&E," she explained.

"Joey by the time we arrived had made a new friend with the paramedic, who was amazing. Joey's episodes go from zero to a hundred, his system is extremely volatile. We just don’t know what is going to come next.

"He is so vulnerable and each episode of an illness just brings it all back home to us. We have a sick child and it feels like we are always paddling upstream.

"Thankfully Joey was treated for croup and strider where he was closely monitored and recovered really well and we all got home at 4.30am. Yes an everyday childhood illness but for Joey and with his condition times it by 100! But as always Joey smiled and laughed…this video was taken at 1.40am. Help in whatever way you can to get Joey to Chicago," she concluded.

Joey’s Reality

After a short but lovely meeting with the Offaly and Laois teams Wednesday night…

Our reality bites us back! We had to ring an ambulance at 9.45pm, Joey couldn’t breathe!

We were alarmed like always to a cough but this sound was different, I ran up the stairs… pic.twitter.com/hxOZekyqRD

— Join together for Joey (@JoeyTogether) January 5, 2024

In their GoFundMe fundraiser, Joey's parents explain that the youngster, whose favourite song to dance to is 'Oh My Johnny' by Tullamore bad Chasing Abbey, could be saved by a very expensive surgery.

"There is a Meso Rex Shunt/Bypass surgery that can be done for Joey. This surgery is available in Chicago and all in will cost €330,000, where we will have to stay anywhere between 8-12 weeks from pre-op to post-op. It is a 5 hour surgery that connects the superior mesenteric vein to the left portal vein using an internal jugular vein," they explained.

"This procedure bypasses the obstruction and restores normal portal flow into the liver. This can restore Joey’s system back to normal function. It would be both life saving and life changing and give him his life back."

The parents added; "The best outcome of the surgery is to operate on a system that has not had any bleeding yet i.e. a system that is not under too much pressure. And we are against the clock because the sooner we get this done for Joey we immediately eliminate the threat to his life of bleeding or another septic event.

As 2023 comes to a close and after already reaching €100,000 we wanted to share a video of Joeys story so far. We are going in the right direction now and we hope everyone has a great 2024
So please keep liking, sharing and donating.
Happy New Year #jointogetherforJoey pic.twitter.com/Hsj5Vu5AlO

— Join together for Joey (@JoeyTogether) December 31, 2023

"He won't be held back in his development and catch up where he has missed. His spleen will go back to a normal size, where his white blood cells and platelets will go back to normal levels, which his risk of serious infections will reduce and allow him to fight infection normally.

"Without this surgery for Joey, there is a 40% risk of death in the first episode of bleeding. Without this surgery he is at risk of a third sepsis episode and nobody knows how the third one would affect his body this time or if he would survive it.

"If this surgery is completed in a healthy system (not bleeding) that Joey currently has now, there is a 90% chance of success and restoring Joey’s system and curing him of all other symptoms. Giving Joey this chance now in the next 6 months would change his life forever.

"And as parents, we want Joey to go to preschool in September with his cousins, play football with his brother Jordi, dance in the kitchen with his sister Molly and simply live his best life that we can only hope and dream for if he gets this surgery."

You can support the Join Together for Joey fundraiser HERE.