A toddler who was "adored by the whole of Liverpool" took his last breath after his parents kissed him goodnight.
Daniel O'Connor, from Aigburth, died on March 15 with his parents Lisa O'Connor, and Paul O'Connor by his side. Daniel was eight months old when he was diagnosed with NOCGUS syndrome - a severe and extremely rare condition which left him unable to talk, walk or eat and needing round the clock care.
The 19-month-old leaves behind his mum Lisa, 34, dad Paul, 38, and siblings Jasmine, seven, Holly, five, and Koby, one. Paying tribute to Daniel, Lisa said she wants everyone to remember him for his smile which was the "cheekiest smile" you could imagine.
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Lisa told the ECHO: "I'd say the whole of Liverpool adored him. Although he didn't speak and he was tube fed, he gave everyone something else that no other child could give you. I think so many people used to follow Daniel's journey.
"Daniel had numerous surgeries, he's been in traumatic situations every single month and nothing phased him. He always had a smile on his face no matter what. Everyone knew him for the smile he had and I don't want anyone to forget that smile - it was the cheekiest smile."
Daniel was just eight days old when he was rushed to Alder Hey Children's Hospital after suffering from a severe seizure. After undergoing a series of tests he was diagnosed with NOCGUS syndrome, aged eight months old.
Lisa, who had just fallen pregnant with her fourth child Koby at the time, said: "[Doctors] said Daniel will never walk, talk or eat, so obviously our world fell apart there and then."
In the weeks before he died, Daniel started to suffer from intestinal failure and doctors gave the family the option to keep him in hospital or continue his care at home. They decided to bring Daniel home and make the most of the time they had left with him, which included having a photoshoot and taking him on a trip to Wales.
Lisa said: "I can honestly say those two weeks were the best he's ever been."
Daniel was christened at home on March 15, just hours before he died. Lisa said: "Paul took him up to bed with us and put him in between us. We both literally gave him a kiss goodnight and he took his last breath.
"It gives me so much comfort that if I had to choose a way for it to happen that's exactly how I would have chosen him to be. He was so peaceful, so comfortable."
Thousands of people turned out for Daniel's funeral on Friday 1st April, which Lisa described as a special day. Instead of flowers, the family have set up a Gofundme page with all money raised going to Alder Hey Children's Hospital - a place that's close to their hearts.
In a message on the fundraising page, Lisa said: "Alder Hey have been a huge part of our lives since Daniel came into the world, and have walked every single hurdle with us. I really don't know where we would have been without them; the consultants, doctors, nurses, matrons, surgeons, HCA’s, domestics, house keepers, chefs, play specialists, the list is endless. But every single person in Alder Hey Hospital has had a massive impact on our lives which made our Alder Hey life a lot easier and also very special x."
If you would like to visit or donate to the Gofundme page click here.
