The second little Chloe Monte opened her sparkling blue eyes to take in the bright new world around her, her parents knew they had produced a little charmer.

Weighing in at just under 5lb, Chloe and her twin, Amelia, were healthy babies and quickly enchanted everyone around them.

But within weeks, mum Sarah and dad Simon, from Rawdon, feared for Chloe’s life after she developed a rare condition which left her in agony and unable to eat.

Chloe was diagnosed with a segmental facial haemangioma – a type of tumour of the blood vessels in her face.

It started with a tiny red mark on her cheek.

A common occurrence in newborns, doctors assured Sarah and Simon that the marks normally fade as children mature but in Chloe’s case it ulcerated and spread within days, covering both her airways and one of her eyes.

Mum Sarah, who works for the Royal Bank of Scotland, said: “Both the twins had the marks when they were born – Amelia’s is on her neck. Doctors told us to keep an eye on them but we weren’t too concerned.

“But within weeks Chloe’s had spread very quickly. It was terrifying because it covered both her nose and her mouth. She couldn’t feed, began losing weight and nothing seemed to take it down. Simply opening her mouth was agony.”

Chloe was quickly referred to a specialist as her condition worsened and was put on medication. She was seen by five consultants in a bid to treat the condition and flitted between Leeds General Infirmary and Great Ormond Street Hospital in London as her parents attempted to give her the best care possible.

With the haemangioma having swelled to cover her mouth and nose, she was unable to feed.

She began to lose weight and had to have a gastrostomy fitted into her stomach to give her the nutrients she required to survive.

Sarah said: “In those first few weeks I really feared for her life – she was such a good little patient, always cheery, always bubbly. She has the cheekiest little character, she is always curious about what’s going on around her and is such a happy little thing, and it quickly became clear that she was a wee fighter.

“She was just months old and had to have three general anaesthetics – one for an MRI scan, but she kept her cheery nature throughout. All the doctors commented on how smiley she was and she quickly charmed all the staff who worked with her. Luckily she was being treated by one of the leading experts in the world on the condition at Great Ormond Street Hospital and the staff there and in Leeds couldn’t do enough for us.”

As her condition worsened, little Chloe had to have a central line put in to her heart to give her the antibiotics she needed to fight the infection.

Her face then had to be dressed daily with the help of a team of community nurses.

Thankfully, through the expert care of the medical team at both hospitals, the infection has now gone down, but Chloe now faces reconstructive surgery throughout her childhood.

She will have to endure an operation on her mouth and nose which have been damaged by the infection.

Her face is red and marked where the haemangioma occurred although doctors have assured her parents that will fade over the years.

Now aged eight months, Chloe is also on medication and will have to use the gastrostomy for at least 12 months, although she can now take milk orally and is weaning.

Sarah said: “Everyone has been so supportive and helpful to us – doctors, nurses specialists and all of our family and friends, as well as the local community, and in the middle of it all we realised we wanted to do something positive to give something back.

“The condition is very rare, but doctors don’t really know what causes it and we knew we wanted to help boost funds into researching the cause.

“I don’t think they will ever be able to prevent haemangiomas but hopefully with research they will be able to better understand why they occur and how to treat them.”

Sarah and Simon have now launched Chloe’s Appeal and want to raise £5,000 to split between Great Ormond Street haemangioma research and Leeds General Infirmary children’s assessment and treatment unit and have organised a host of activities to do so.

Simon said: “We have been astounded and touched by the support we have received. People who don’t even know us but who have heard about Chloe’s condition have sent us cheques, wishing us well.

“Everyone has been so supportive and we are keen to raise as much as possible to help raise awareness of the condition. We also want to let parents know about the condition so that they are aware of where to go for help. We have arranged shoe parties, jewellery parties, a sponsored walk and all sorts of other events and so far are getting near our target. We are keen to get as many people as possible to support us.”

The couple’s next big fundraising event is a charity ball, due to be held at the Stansfield Arms in Apperley Bridge. The event, which has live entertainment and an auction, will take place on Sunday, December 13, from 6.30pm.

Tickets cost £40 (£350 for a table of ten) and are available from Ann Garnett on 07899 911585 or by emailing growler01@sky.com.

The couple also have a Just Giving website at justgiving.com – search for Sarah Monte.

Simon said: “The ball will be a winter wonderland and we have Rawdon and Grove Choir singing as well as a three-course meal, barn dancers and all sorts of wonderful auction prizes, including a West End Trip in London and a cricket bat signed by the England team.

“The money will be put towards research and also buying much-needed toys and equipment for the children’s ward, such as Play Stations for kids to play with and sensory lights to encourage babies and young children to look at them. What happened to us was awful but we also realise how lucky we are to have two beautiful daughters and the support we have had from people has restored our faith in human nature. Now we want to give something back.”