THE family of a teenager who died of an extremely rare disease have opened up about their daughter’s battle with the condition.

Carlie Morrison’s world was turned upside down after she was diagnosed with desmoid fibromatosis in September last year.

The 17-year-old, from Blackburn, discovered she had a lump under her armpit in 2017 as part of her yearly scans, which she undertook due to being born with partial deletion of chromosome 5Q, which affected her development and motor skills.

The lump was detected and originally, it was believed the lump was a build up of calcium and would be monitored with check ups.

However the lump began to grow aggressively and became the size of a ping-pong ball by August of that year.

The former Longshaw Community Infant School pupil carried on with her life, however the lump kept growing and three more appeared on her tummy.

In September 2018, doctor’s discovered the devastating news that Carlie had the rare disease and the lump under her arm was removed.

The former Crosshill Specialist School pupil’s parents were told the devastating news their daughter would only have a few years to live.

Nathan Morrison, Carlie’s dad, said: “It didn’t feel real.

“I’d just been told my daughter was going to die.

“We had to focus on giving Carlie a better quality of life.

“She started on chemotherapy the following month and then began the weekly trips down to Manchester for treatment.”

Carlie would visit The Christie NHS Foundation Trust for treatment every Friday.

Despite the treatment. the lumps on her abdomen kept growing.

Mr Morrison, 41, said: “They just kept getting bigger.

“Carlie kept saying ‘it’s like carrying triplets’.

“They had to be dressed and attended to every day because they started to break through the skin and we didn’t want them getting infected, especially with having the chemotherapy, she had to be careful about getting ill.”

Desmoid tumours are usually benign, however in rare cases they can become active and often found in the arms, legs and stomach.

They can affect anyone but usually found in young adults, especially women.

Mr Morrison said the treatment had a big affect on Carlie.

He said: “It changed her but she always smiled.

“She became very quiet but the treatment makes you so ill - it must have taken so much out of her.

“She ended up having periods of stay in hospital and we really wanted to get her home for Christmas last year.

“The hospital, the school, everyone made a real big push to get her home and we got a grant from the council to help with mobility issues.”

Carlie came home on December 22 and was able to spend - what was her last Christmas - at home with family.

After going through a long course of chemotherapy, Carlie was set to undertake dialysis due to kidney issues in late May this year.

However she never got the chance to undertake it as in June Carlie’s parents were told the awful news that they only had 48 hours left with their daughter.

Mr Morrison, along with his wife, Claire, 41, Carlie’s mum, and Carlie’s brothers, Owen, 20, Jack, 18, and Layton, nine, spent the last few hours together.

Carlie sadly died in June, leaving the family devastated.

Mr Morrison said: “Frankly I was broken.

“Carlie was always smiling through the whole thing, she never, ever, ever complained.

“It wasn’t real for me, I was still in shock.

“It was only after I came out of the shock I realised I was in it.

“It had been a monumental effort from so many people.

“Claire was a fantastic mum, my work was great with time off, all the hospital staff were fantastic with her.

“It was a drain on us all, especially the boys.”

Mr Morrison said a doctor revealed at Carlie’s inquest that his daughter’s case was the most aggressive form of the disease found in the UK.

The family are now trying to raise funds for The Teenage Cancer Trust, which supported the family from their first appointment.

Mr Morrison said: “They provided us with some special moments that will be unforgettable.

“But this aside they never ever excluded the rest of the family inviting us all to events and feeding and providing accommodation for them all when visiting Carlie in the Christie hospital.

“We’re trying to raise money for them and raise awareness about the disease too.

“It’s so rare and the more we know about it the better the chance we have to treat it.”

The family are currently trying to raise £10,000 through various events, they have also set up a Facebook and JustGiving page to help rally support.