A FOUR-year-old girl is battling a rare condition with the help of her supportive family.

Young Milea-Rose Jones, from Markham, near Blackwood, suffers with a rare and little-known condition called Noonan Syndrome, which causes multiple developmental issues. The condition is mainly genetic, but it can also be developed on the spot in rare cases - which is the case for the four-year-old who has the PTPN11 mutation, but none of her three older brothers or parents do.

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(Milea-Jones is currently undergoing chemotherapy. Picture: Leanne Newman-Ford)

Issues can relate to growth, heart defects, facial and spinal deformities, hearing and sight issues and in some cases, learning disabilities. The chance of having Noonan Syndrome is one in 1,000 to one in 2,500.

Milea-Rose’s mum Naomi Jones faced a long and difficult task of getting her daughter diagnosed due to the lack of knowledge about the condition.

She said: “I knew something was wrong with Milea when she was born. She kept getting ill and doctors thought I was being paranoid.

“When she was two, we got to see a geneticist and then six months later we received her diagnosis of Noonan Syndrome.”

Mrs Jones was relieved when she had a diagnosis as it explained why Milea is like she is, but she said that it was still a worry as she did not know what it entailed.

The family want to raise awareness of the condition. Mrs Jones has found some comfort in a support group for people with Noonan Syndrome, however, the majority are from America.

“Most of the people I have spoken to in the group are from abroad, but they have been brilliant with us. I would post in the group with some symptoms Milea had and they would advise on what to do.”

They can be in part responsible for Milea still being alive as Mrs Jones explains.

“14 weeks ago, Milea was diagnosed with a brain tumour. She was getting headaches and I mentioned them to the group, who all immediately said to get her checked out with a scan, so I took her to hospital, and they diagnosed a brain tumour.”

Milea has had an operation to remove 50 per cent of the tumour, however the remaining part cannot be removed due to its location. She is now having chemotherapy to reduce the tumour further.

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On August 31, the four-year-old suffered a spontaneous bleed on the brain and was left unconscious for two days.

Despite the deterioration with the sight in her one eye – which the family hope is due to the bleed not the tumour in the hope that she can regain her sight – Milea remains a happy child and is looking forward to her fundraising activity.

“Milea is constantly smiling and always pleasant. She never complains about the pain she is in and she only mentions it if it is unbearable for her.

“She has started losing her hair now and has bald patches. She is devastated as it has taken her three years to grow her hair and she loves it.

“Myself and my mum are having our heads shaved so that she is not alone.”

South Wales Argus:

(Young Milea-Rose Jones suffers from Noonan Syndrome and has a brain tumour. Picture: Leanne Newman-Ford)

A fundraising event has been set up for today, September 23, at Markham Primary School, where Milea will shave her mum and nan - Janet Morgan -’s hair off with the help of hairdresser aunt Leanne Newman-Ford and staff at Shear Divine. A fundraising page has also been set up to help with the purchasing of wigs for little Milea.