Doctors spent eight years telling a family their daughter had an eating disorder – before discovering she has a rare condition that makes it impossible to eat.
Grace Jackson-Matthew, 14, was told for eight years her eating problems were psychological until a new test in Germany revealed she had four different illnesses, that cause her blood vessels to be crushed.
The teen has not been able to eat for months because of the pain she feels because her organs are putting severe pressure on her major blood vessels.
Her parents say life-changing surgery that will stop her deteriorating is not available in the UK and they face a £50,000 bill to take her abroad.
Mum Joanna, 45, said: “We have had three in-patient hospital stays. We have almost had to self diagnose and tell them what she has wrong with her.
“It’s a miracle we have got the diagnosis.
“It is urgent, if she isn’t able to have the surgery she will eventually die of malnutrition.
“We don’t want her to get the stage where she is totally emaciated and too weak to go for surgery.”
So far they have raised over £11,000 in an online Crowdfunding campaign.
The multiple artery operation will involve a drastic re-arrangement of Grace’s arteries and veins to relieve the pressure.
If left untreated, Grace will be unable to digest food and need to be fed through a tube.
She also faces kidney failure and will lose the ability to walk altogether.
From the age of six the youngster from Tunbridge Wells, Kent, has endured constant pain when she ate.
She has had to leave school and is now mostly bed-bound.
Doctors here were unable to diagnose a cause and it wasn’t found until Joanna read an article about compression conditions on the internet and took her daughter to Germany.
Doctors there finally diagnosed her with MALS, SMAS, May-Thurner syndrome, and Nutcracker syndrome using a new technique called a colour doppler ultrasound.
The animal-loving teen has lost around 20kg since September and has been surviving on yoghurt and ice lollies as she is unable to eat a proper meal.
Joanna said: “Her quality of life is zero, she had to leave school a year ago, she’s lost contact with friends.
“She can’t eat and she can’t walk – it’s awful.
“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.
“Emotionally it’s terrible for the other children. Grace in her waking hours is in so much pain. She is very close with her sisters.
“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.”
Grace now takes regular doses of morphine and tramadol to cope with the pain.
She has two younger sisters Nina, 10, and Maria, 11, who have been left devastated by Grace’s condition.
Joanna says her family feel ‘abandoned’ by the NHS which she says does not have the specialist knowledge to treat Grace’s condition.
She added: “She’s just been left. Tunbridge Wells Hospital don’t know anything.
“We feel abandoned by the NHS. Despite making plenty of contact, lots and lots of emails, it doesn’t get a response.
“We have been to our GP, to A&E. We even took an emergency action and took her to the emergency wing of St Mary’s Hospital in Paddingdon.”
Her JustGiving link is https://www.justgiving.com/crowdfunding/joanna-jackson-matthew