Meet the amazing Elsie-Rose – the miracle baby who has defied all odds.

The delightful little girl was born with a rare genetic disorder and her devastated parents James and Natasha Nugent were told she had a maximum of a year to live.

But now at 21 months as she chats and laughs away at the family home in Brompton she is going from strength to strength.

Mum Natasha, 26: ”We just can’t believe it. She can count to 10 and has a cheeky sense of humour and likes teasing her older sister.

Elsie-Rose was diagnosed with terminal spinal muscular atrophy which severely limits mobility and causes breathing problems.

It affects one in 10,000 babies and in some cases sufferers can only just about move their eyebrows.

The couple say as the condition is incurable and she is under the age of three she is not to buy equipment which might improve her quality of life.

Natasha said: "I get so angry with some of the doctors. They seem to think she shouldn’t be here anyway and have given up on her.

“We are not deluded. When she has had enough she will let us know. But Elsie-Rose is a little fighter and all the time she is fighting we shall fight with her.”

"It was like seeing your child walk for the first time" - Natasha Nugent

Earlier this month, after a friend’s recommendation, she was given a trial period on a specially adapted power wheelchair, called a snap dragon.

They were amazed at the difference it made and are now desperately trying to raise £26,000 to buy her one.

Natasha, who is also mum to Evie-Rose,aged four, added: “It just transformed her lifestyle and made a massive difference to her life. She was up and down the room in it. It was like seeing your child walk for the first time. She sobbed when it had to go back.”

The fundraising has started in earnest and they have already collected nearly £4,000 in two weeks having sold their second car.

James’ colleagues, based at Brompton Barracks, are planning a three peaks challenge and neighbours have organised a charity car wash. Although Elsie-Rose was born with the disorder it was not discovered until her mum had a car accident.

Natasha said: “As a mum I knew there was something wrong weeks after she was born. But I was told I was over worrying and I had a lazy baby. She had been in the car with me and was while I was in hospital they noticed she was not moving enough. I said that was just normal, but they insisted on giving her a blood test immediately and that’s when we were told.”

Elsie-Rose, who is fed through a tube in her stomach, has six-monthly checks at the Evelina, specialist children’s hospital in London.

Natasha said: “Every time we go back they are amazed at the progress she has made and all the time this is happening we are not going to give up on her.”

If you would like to donate or help to raise money for Elsie-Rose’s SnapDragon chair go to www.gofundme.com/elsie-rosewheelsfo