A HEARTBROKEN family has paid tribute to their "spectacular" daughter who passed away just a day before she was due to start school.
Four-year-old Rose O'Leary-Hall was battling a heart condition and had undergone several surgeries.
But the little girl didn't make it through her final one and tragically died on September 4, just one day before she was due to start school.
Katie O'Leary-Hall and her wife Sue, of Pool-in-Wharfedale, Leeds, were told at their 20-week scan that Rose had an interrupted aortic arch – a condition which affects just one in 50,000 people.
The condition happens when the aorta – the heart's main pipeline that carries oxygen-rich blood to the body – doesn't form completely.
Normally, it's shaped like an arch or curve but with an interrupted aortic arch, part of the aorta is missing, leaving a gap, according to KidsHealth.
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As blood won't flow into the gap until it's repaired, the lack of blood flow and oxygen can damage the liver, kidneys, and intestines, it added.
Symptoms include weakness and fatigue, rapid breathing, rapid heartbeat and poor feeding.
Katie said little Rose underwent surgery to try to repair the defect when she was born, but surgeons were not able to patch up the aortic arch due to her being "very small".
She told how Rose instead had the Norwood Procedure – which involves building a new, larger aorta – when she was just three days old, and stayed in hospital for five weeks afterwards.
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"She was doing really well," Katie recalled.
The tot had another open heart surgery when she was 10 months old, but doctors still weren't able to patch up her aortic arch.
Katie and Sue – who also share an eight-year-old son, Will – said they knew Rose needed a third and final surgery, called a biventricular repair.
But they recounted how Rose "started to really struggle" and even found it hard to walk to her childminder Amy's around the corner.
Her mums counted down the months until Rose's third operation – scheduled for August 15 – hoping it would improve the oxygen levels in her blood.
Rose had the procedure at Leeds General Infirmary and then had a pacemaker fitted on August 24.
Katie said: "After that, everything was just going well.
"She was extubated and started moving – not talking very much but she said 'Hi mummy'.
"But then it all just went horribly, horribly wrong."
'WORST DAY OF MY LIFE'
It appears Rose had contracted endocarditis – a rare infection of the inner lining of the heart – and began to bleed, losing around half of her blood volume.
Katie said: "We got the call saying 'Come now, she has gone into surgery'.
"They couldn't understand where the blood had come from."
Rose was stabilised but the family received another call two nights later and were told Rose had "crashed".
Katie described this as "the worst day of my life".
She said: "What they think happened is that this infection got into her heart and the tissues began to crumble and the patch they had done in the surgery was crumbling.
"They had to open her heart there and then because the chest compressions weren't working.
"People were running to the blood bank and getting blood. Her brain didn't have enough oxygen. They had to turn the machines off."
Paying tribute to the youngster, she added: "I used to call her my little firecracker. She did everything at 100mph.
"She was really, really mischievous but also really loving.
"She did everything at 100 per cent – she cared, she loved at 100 per cent.
"She was just unbelievable, everyone worshipped her."
Rose was known by everyone in her village, Katie said.
She added: "She wasn't shy, always chatting in any little group."
Sue told YorkshireLive that Rose's favourite song was This Time For Africa by Shakira, and on her way to her surgery she danced, and had her mums and the nurses and anaesthetist dancing with her.
Sue said she wanted to be a doctor and, before surgery, got out her little medical kit to look after her dolls.
Rose was an absolute firecracker and so spectacular.
She said: "She was so full of mischief and love and kindness and fun. She was everything on stilts.
"I can't believe we are organising how to say goodbye.
"Rose was an absolute firecracker and so spectacular.
"She left a mark on everyone she met and people felt a connection to her."
Katie and Sue have shared heartwarming videos showing Rose playing with her toy dog and walking at the seaside.
And her childminder, Amy, has set up a GoFundMe page to help cover the costs of little Rose's funeral.
The fundraiser has already reached over £5,000 – something Kate and Sue say they are overwhelmed and humbled by.
Speaking of the donations, Sue said: "We are just gobsmacked by it all really.
"We have been through the most horrific trauma you could imagine and I feel we have just been in a dream-like state, fighting and fighting to save her and not being able to.
"After we lost her, we have been living minute by minute.
"We wouldn't have asked anyone for money but we are just completely overwhelmed by the kindness and just highly humbled by it and the mark she made on everyone's life."
Katie added: "We just want to say thank you, we were really not expecting this.
"We would give it back in a heartbeat to have her back but it will make things easier for us."
The couple also wish to raise awareness of how the disability living allowance – something they were entitled to – stops the day the person who is entitled to it passes.
"There's no grieving space," they said.
Families often use the money to purchase cars to help transport those who need it and it also helps to cover other expenses.
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Katie said: "We're in an OK position but some families use their cars that they only have because of it, or only have a spare room because of it.
"People can be left homeless or careless straight away. It's such a kick to the teeth."
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