Published: 17:37, 12 May 2019
| Updated: 18:33, 12 May 2019
The parents of a teenage girl with a rare condition which makes eating so painful that she hasn't had a meal in months, are desperately trying to raise £50,000 for a life changing operation not available in the UK.
Grace Jackson-Matthew, 14, was finally diagnosed this year with four illnesses MALS, SMAS, May-Thurner syndrome, and Nutcracker syndrome, all of which mean arteries and veins in her body are being crushed by ligaments, bones, and organs. - known as 'compressions.'
From the age of six the youngster, from Tunbridge Wells, had endured constant pain - particularly when eating - and has become mostly bed-bound and needs crutches.
Because of the incredible discomfort the animal-loving teen, who adores her pet beagle Billy Bob, hasn't eaten a proper meal since September, surviving on easy-to-eat foods like yoghurt and ice lollies, and has since lost 20kg.
She has also had to drop out of school - something which has been particularly difficult for the sociable girl nicknamed 'Crazy Daisy' by friends.
"Her quality of life is zero, she had to leave school a year ago, she's lost contact with friends," said Joanna, 45. "It's affected her sisters and the family too, because I need to be with her I'm effectively housebound and up in the night with her.
"This has hit us like a bolt out of the blue, we've always known something was not right but we never imagined it was something like this."
For the last eight years Grace and her parents Joanna and Dean pleaded with doctors to find the cause but because of her condition's rarity it wasn't found until the mother read an article about compression.
She then took her daughter to Germany when she had heard other sufferers found the answers they were looking for.
Using a recent innovation in testing known as colour doppler ultrasound doctors there managed to finally solve the mystery.
Until then, Grace had been told her symptoms were likely caused by mental illness.
She has since been given regular doses of morphine and tramadol to cope with the pain - but these medicines come with a number of risks including addiction.
Despite the revelation, the multiple artery operation which could save the teen from her suffering isn't available in Britain, and the family must raise £50,000 and travel to Europe to have it done.
The procedure will involve a drastic re-arrangement of Grace's arteries and veins.
If left untreated, she will be unable to digest food, will need to be fed through a tube, develop pelvic congestion, her kidneys will fail, and she will loose the ability to walk.
Mum Joanna said: "It is urgent, if she isn't able to have the surgery she will die, she will eventually die of malnutrition. We don't want her to get the stage where she totally emaciated and too weak to go for surgery.
"The other thing with compression syndromes is the longer you leave them, the more you get."
The family has set up a Crowdfunding page to pay for the operation and have so far raised a quarter of the money they need.
More by this authorWilliam Janes