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"We did not know if she was going to breathe when she was born," says mum, Louise Aisthorpe, whose one-year-old daughter was born with a rare heart and lung condition.
Leilani has only recently celebrated her first birthday but her short life has already been a constant cycle of hospital appointments, tests and needles.
The family hope their daughter can have life-changing heart surgery
Louise from Rochester said: "It breaks my heart seeing her face as she pulls into a hospital. She just thinks doctors are evil people.
"Everyone has been lovely but it has got to the point of 'can we put her through this forever?'"
The family discovered their baby girl had a condition called Aberrant Right Subclavian Artery (ARSA) at their 20-week pregnancy scan, just before Louise and husband Leon, 40, were due to get married.
ARSA means Leilani has a fourth vessel branch out of the aortic arch which goes behind the windpipe and the oesophagus – the tube that connects the mouth to the stomach – which Louise describes as "being strangled from the inside".
In most people there are only three vessels but 1% of the population have four, like Leilani.
Two months ago during a CT scan, doctors discovered she also suffers from a rare lung condition where three-quarters of her right lung is dead.
This means the tissue does not function as a lung therefore the one-year-old is only breathing with essentially one lung.
Due to her two conditions, Leilani struggles. She cannot lie flat or eat solid foods and must be fed every two hours, 24-hours a day but this leads to a lack of sleep which the Aisthorpe family are worried will stall her growth and mean she does not get enough calories.
The 36-year-old of Hathaway Court, added: "She needs to be OK. It is unsustainable. We are shattered. It has been a year and a bit but it is what she needs.
"When she is having a bad day she just wants mummy and daddy. She still comes home crying."
Leilani currently has a nasal feeding tube which is not working and is awaiting surgery to have it directly in her stomach.
She can also have episodes where she stops breathing, turning blue.
Her mum recalls one time where they needed to call an ambulance but were left waiting for a long time: "It is really scary. What if that time we lose her? There is always that worry."
Since she was born, the one-year-old has been in and out of hospital and is under the care of Medway, Maidstone, Pembury and The Evelina in London.
Her mum who had to leave her job in the beauty industry to care for Leilani full-time said: "The tears, the stopping breathing, the doctors and nurses and appointments, the rushing to the hospital in the middle of the night, the sadness in my baby girl's eyes when we pull into another hospital car park or get on a train to Evelina – she is such a little fighter.
"We want to give her the quality of life."
Leilani is one of six children in the Aisthorpe and Morgan family but as she is so ill Louise says it has impacted all their lives.
Louise has also had to pull their son Henry, who is two, out of nursery due to the fear of germs and infection.
"We want her to have a life but it is about the quality of life for the family too," Louise adds.
Despite her condition, Leilani is still a "happy and amazing girl" but to give her the standard of life she deserves the family need to take her to Boston for specialist surgery.
Louise added: "This is the only one that can give our little girl the standard of life she deserves, Boston means getting her as fixed as we can without ongoing surgeries.
"She will always need care but she can lead a normal life. She is not going to run a marathon but will be able to go to nursery."
The operation will involve removing the dead piece of lung leaving her with only one lung as they are concerned the good working part will not grow while the non-functioning part is still attached.
They will also re-route the artery but will not know how this needs to be done until they start the operation.
But the family are in need of help and have started a GoFundMe page to help fly their daughter to the United States and get her the treatment she needs.
They have also arranged fundraisers at businesses who are helping them raise the funds including Apollo Specialist Brickwork and Charisma Beauty.
To find out more about their fundraiser or donate you can visit their page here.
