A four-year-old girl who suffers from a rare genetic disorder has a cancerous brain tumour which doctors say they can’t remove.

Milea-Rose Jones was born with Noonan syndrome. This is a rare genetic disorder that prevents normal development in various parts of the body. It can cause unusual facial characteristics, short stature, heart defects and other physical problems. Milea-Rose, from Blackwood , was diagnosed with brain cancer around 15 months ago and has recently started chemotherapy and is starting to lose her hair. Doctors told the family Milea had a brain tumour around her optic nerves and meant they were only able to remove 50% of the tumour. She has since lost complete eyesight in her right eye.

Her family feared the worst two weeks ago when Milea-Rose had a bleed to the brain and an infection.

Her aunt, Leanne Newman-Ford, said Milea-Rose has had constant hospital visits since she was born and on one occasion the family were visiting four hospitals a week.

Leanne, 31, said: “It has been so hard for us ever since she was born. She’s so bubbly at home and she’s such a fun person to be around. Milea is everything you expect of a young girl and everyone loves her company.

“No one knew what was wrong with her at the time and we were visiting different hospitals and physios. She has unusual facial features and we didn’t know much about the disorder at all.

“When she was diagnosed with the cancer, it was heartbreaking. I was having my baby at the time and it was dreadful. The doctors said it was an emergency and that she had to be transferred to the University Hospital of Wales .”

Milea-Rose’s mother, Naomi Jones, 28, is a single mother-of-four and is being supported by her family.

Relatives are now planning to have their heads shaved next week at Markham Primary School in Blackwood, where Milea-Rose used to go to nursery, to raise money to support the family during hospital visits.

Milea-Rose’s grandmother Janet Morgan, 52, said: “Milea loves her hair, it’s her pride and joy. I’m letting her shave my head so that as she is losing her hair, she doesn’t feel any different.

“What her and her mother have gone through is incredible. More awareness needs to be raised on the syndrome as most people aren’t aware of it.”

To assist with Milea-Rose’s mother with costs of hospital visits, please visit the Go-Fund page at,

https://www.gofundme.com/f/milearose