Hi everyone,

this is a go fund me set up for our son Nickey junior who was born premature at 27 weeks on the 03-05-23 in the coombe hospital. our son was born by emergency c-section weighing only 985 grams. He was intubated at birth as there was a risk that we were going to lose our child .he was born with a cleft lip and palate so genetic testing was carried out after birth to check for a syndrome.it had come back in the early days of his life that our boy had T21.with in the early stages of his life he was diagnosed with severe chronic lung disease and an ASD. After a month spent in the coombe hospital he was referred to CHI crumlin. within his stay at CHI he had being diagnose with hypothyroidism and severe pulmonary stenosis along with pulmonary hypertension. he had undergone a balloon angioplasty to help unblock his pulmonary veins and arteries but this was unsuccessful. this means our son was not getting the correct blood flow from his heart to his lungs which causes him breathing difficulties and to be exerted and his heart has to work a lot harder which leads him to go into cardiac arrest which it has done on many occasion. our little boy was oxygen since he was born but just removed a few months back but its on stand by as even a common cold can lead our son to be intubated and to be put back on long term oxygen all our sons medication and feeds are give threw a peg which is hard for him to gain weight as his input of food through mouth is very little due too his cleft palate he has under went cleft lip repair which was successful but awaiting cleft palate surgery depending on weight gain. his most recent diagnosis was his kidneys not growing which will lead to dialysis and a kidney transplant down the line also a new gene has being detected TN113 which can lead to heart failure. about a year ago our little man was discharged from CHI for palliative care with no intervention which was heart breaking news . we can see there is a lot of will power in our son fighting every day of his life and we as his parents believe our son deserves a second chance so with great time put into research we found a hospital outside of ireland that where now we have our son on a waiting list for a lung transplant which is vital for him going forward unfortunately this is not covered under HSE and we had no option only start up this go fund me page where we are hoping to get the support and backing of ye the public to help raise funding to help give nickey junior a chance in life. for the moment we attend all of nickeys hospital appointments and his regular hospital stays due to his severe lung condition as its worsening day by day so i like to ask if you could share this go fund me with friend and family and we know times are hard but if you could make a kind donation it would get our son closer to getting his vital surgery

thanks

mam,dad and baby nickey