Reaching Anthony’s dream with half a heart

Hi, my name is lizzie, I’m doing this on behalf of my little 7 year old boy Anthony! Anthony was born on 10th July 2017 with a condition called pulmonary atresia , tricuspid atresia , hypoplastic right heart syndrome, single ventricle physiology and he is at risk of unpreventable sudden cardiac death! Our world came crashing down when we found out on our 20 week scan that our little boy would have a major heart condition and would need 3 open heart surgeries and many other procedures to survive, he was admitted to alder hey children’s hospital 1 day after being born, and was being kept alive by a drug called prostin until he was strong enough for his first surgery! At just 2 weeks old he went down for a pda stent, this failed leading to over circulation and cardiac arrest, this meant he then needed a huge open heart surgery at just 2 weeks old called the BT salvage shunt as this was now a case of if he didn’t have the surgery he wouldn’t make it through the night , the waiting for him to come out of theatre was horrific but after 9 hours we could see him , his little body was covered in tubes, and his chest left open, then needed another surgery to stop excess bleeding in his chest just hours later , Anthony seemed to be recovering and a couple of days later his chest was closed , and on minimal breathing support , but again he deteriorated leading to re intubation, this deterioration happened a few times requiring extra support until he was finally well enough to make it to the ward from icu! At 8 and a half weeks old we made it home on home oxygen and regular monitoring , but after just a few weeks of being at home Anthony was re admitted to alder hey children’s due to low oxygen saturations , he had suffered from a lot of cold viruses at the time and on top of that, he needed his 2nd stage open heart surgery the Glenn shunt , he was admitted to icu once again due to deteriorating then on he went from icu to theatre to have his Glenn shunt , 5 weeks later we were able to once again take him home! Anthony had his final 3rd stage open heart surgery called the fontan back in July 2021, he was home after 3 weeks with minimal complications just being prolonged chest drainage, Anthony seemed to be doing well for a couple of months after his 3rd stage open heart surgery but gradually started deteriorating, becoming much more breathless and blue again, he had a cardiac catheter in November 2022 to investigate this , and the decision was not to close his fenestration ( hole they put in to relieve pressure ) because his body was clearly using it and there was no major increase in oxygen levels when the temporarily occluded it during the cardiac catheter, and his right pulmonary artery was also ballooned as this had narrowed to see if this helped , time went on and things were not getting any better and Anthony just kept on struggling even more! Anthony went on to have Another cardiac catheter at alder hey in September 2024 , the results of this were not what we had expected , his pressures within the lung and heart were high , and this is a sign that the heart is struggling, even though they did stent the right pulmonary artery as it had narrowed once again Anthony shows no improvement , we had Anthony’s cardiology review in November 24 , we were informed that Anthony was going to be referred to Newcastle for heart transplant assessment and was to be started on some medications to try help his pressures and heart function but we were also told these are not miracle cures and may only prolong things before he deteriorates further! Anthony had his heart transplant assessment at Newcastle in February 2025 which was very gruelling as he had to endure lots of tests, Anthony has been added to the routine heart transplant list as of march 2025 , this was such a shock for us as a family, but this is now Anthony’s only way forward to due to fontan failure (this was supposed to help keep his heart stable for much longer ) but Anthony’s single ventricle heart is struggling to keep up with the load…. Anyway the reason we are doing this go fund me is because there is a place that is very special to Anthony and his 10 year old sister Lillie, this place is flamingo land resort Yorkshire, we have been going there and staying for a weeks holiday at a time for the past 5 years , and because of how much both of our children love this place , we did look into possibly buying a static caravan there because it is their happy place and it would be a place to just go to when we needed to get away from reality when we need to escape for a while as life has been so tough for us as a family at the moment due to everything going on with Anthony, but it just isn’t affordable for us to do alone , we thought it’s worth a try to be able to make the best memories with our gorgeous Anthony and his sister Lillie as we don’t know when we will get that call for his new heart as it could be anytime and time is so precious, even after getting his new heart this won’t be a cure but may give him a better quality of life than he has now, but we know that his new heart won’t last forever as average life expectancy after transplant is around 15 years but this varies from person to person, I have added some photos of him whilst he was in hospital into this go fund me so you can all see the clearer picture of what our little man has had to endure in his short life and what he is still to endure!