Rochester family have week to raise £10k for one-year-old daughter's life-changing surgery
Published: 13:54, 14 January 2022
Updated: 15:04, 14 January 2022
A family has only one week to raise £10,000 to pay for their sick daughter's life-changing heart surgery.
We previously reported how Leilani Aisthorpe was born with a condition that only a doctor in the American city of Boston could operate on.
The family hope their daughter can have life-changing heart surgery, now in London
But after several discussions, the family has been able to locate a consultant in London who will be able to perform the much-needed surgery.
Mum Louise Aisthorpe said: "It is still a ridiculous amount of money but is less stressful than having to go out to America.
"She is just really unhappy. It is one of those things, we are in and out of hospital all the time. We can get her in but it needs to be now. As a mum and dad we are left with no options not to do it. "We cannot keep watching her be so poorly."
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 one-year-old 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.
Late last year, 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 she 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.
She can also have episodes where she stops breathing, turning blue.
The little girl spent last week with an infection and the family were told her artery has her in a strangle hold and is getting tighter as she is growing.
Louise of Hathaway Court, Rochester, explained the first operation will re-route Leilani's artery but the family are on a tight deadline as the doctor is expected to leave the country in a few weeks.
Leilani will then have a second operation when the doctor returns to the UK which will look to remove the dead piece of lung.
The 36-year-old added: "They do not know if she is strong enough to do different operations at the same time. Even putting her to sleep is risky.
"She will be in the high-dependency bracket and kept asleep for a few days after.
"It is horrible. It is being apart again but we need to just get her fixed.
If you would like to donate to the fundraiser you can do so here.
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Alex Langridge