On August 14, 2021, Tommy and Natalie Conway (nee McCabe) from Tullamore welcomed their gorgeous baby boy, Joey.
Baby Joey became the little brother to Molly, and in 2023 he became a big brother himself to baby Jordi.
Unfortunately, Joey, who is only two years old, has had a traumatic time in his short life, more than some of us will have in a lifetime.
Due to his life threatening condition, Joey faced many challenges, including a serious sepsis infection.
“We nearly lost our precious Baby Joey in March when he developed invasive Group A Strep (iGAS),” his doting parents said.
“It left our baby on a ventilator in the ICU in CHI Crumlin for two weeks. All we could do was watch him fight for his life.”
This was Joey’s second sepsis infection, having had one when he was only 8 months old.
Joey was then diagnosed with Portal Vein Thrombosis (PVT), which has led to a serious and rare condition – Non-cirrhotic Portal Hypertension.
Portal Hypertension has life threatening symptoms and the risk of death is 40% on a first episode of bleeding.
The bleeding comes from varices that develop in the oesophagus, so little Joey will either bleed from his mouth or through his nappies.
“Joey is the funniest two year old boy with the biggest smile and the most infectious laugh that would brighten up the darkest day,” his parents said.
“He has been through so much in his short life and is the bravest little man who is loved so dearly by his big sister Molly and little brother Jordi.
“As parents we are constantly living on the edge in fear of ‘is he going to cough up blood? Or is this the nappy that will have the blood in it?
“We hear him coughing in bed, we check straight away to see if there is blood on the sheets. Or is he having too much fun laughing and shouting, will this make him bleed? Or is he at risk of infection and developing another sepsis?”
In August 2023, Joey began a management program for his condition; this involves going under general anaesthetic for an endoscopy procedure for banding of varices that develop in his oesophagus.
This will happen three or four times a year for Joey with no improvement to other symptoms or his condition. This is the only treatment available for Joey in Ireland.
There is a Meso Rex Shunt/Bypass surgery that is available in Chicago, and all in will cost €330,000, including a lengthy stay of two to three months from pre-op to post-op.
It is a 5 hour surgery that can restore Joey’s system back to normal function.
It would be both life saving and life changing and give him his life back.
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,” his parents said.
“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 six 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.”
A voluntary group has been put together to help raise the money for Joey to have this life saving treatment this includes, Joeys Grandad, Colm McCabe, Attracta Brady, Events Coordinator, Jillian Maye Cleary, Administrator and Aisling Owens, Social Media.
While Laois’s Bryan Breen, who was heavily involved in the DoItForDan campaign, is also a coordinator.
If you like to donate to this worthy cause please do so by donating to the ‘Join Together for Joey’ GoFundMe page, where over €130,000 has already been raised.
If you would like to have an event to raise funds please email jointogetherforjoey@gmail.com.
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