'She was my angel' – Telford parents pay tribute to inspirational 20-year-old Demi-Leigh

"She was the heart of the family, everyone cherished and loved her."

Kerry Mahon glances at the ceiling, then towards her husband Darren as they remember their daughter.

Demi-Leigh died at home on October 27 in her parents' arms. Her death has left a hole in the family, but her legend will always live on.

"She was a beautiful, kind and generous. She was a sweetheart, she loved life," says Kerry, sat in the front room of their Horsehay home in Telford.

"She loved everything that young girls love. Reality television, Hollyoaks. She loved her make-up. She would watch make-up tutorials, and sometimes you would catch her putting on her make-up at 12 o'clock at night. She was a joy to have."

But Demi-Leigh had a complicated illness. It was so rare that it was never able to be officially diagnosed and doctors referred to it as Demi-Leigh syndrome.

She defied the odds her entire life. Kerry, who became her full-time carer, and Darren, 41, were told numerous times that Demi-Leigh's life expectancy would be short. Initially she wasn't expected to live beyond a toddler's age.

"One minute they [the doctors] would tell us we needed to prepare ourselves and the next minute she would be sat eating sausage and chips and sticking her thumbs up as if to say 'You ain't getting rid of me that quick'. She was amazing," said Kerry.

"Even though it was hard at times she never let life get her down and was always quite positive, hopeful that one day there might be a cure out there.

"Even though she had a life-threatening condition she made the most of life and didn't let anything hold her back. If she wanted to do it then we would find a way.

"She was courageous and brave, especially in the last few months, weeks and hours."

Courage

It had not always been an easy life for Demi-Leigh. Hospital visits were common, and she was susceptible to bugs, chest infections and pneumonia because of an immune system deficiency.

She also had the lung disease called bronchiectasis which affected her breathing.

"It was so unique and complex that they used to say they didn't think there was another condition like it in the world," said Kerry, 44. "She had different aspects of different conditions but it wasn't specifically one of them.

"We heard the word unique a lot about Demi-Leigh."

She had to leave school at an early age as to avoid catching any bugs, but determined as she was she completed a course at Walford College in Animal Care.

"She loved that course and we always said that she would go and work with animals. She always had a way with animals and loved the dog, horse and owls," said Kerry.

"She was very tiny and petite for her age. It was like she was frozen in time. She didn't age. You could look at a photographer of her at 20 and she would still have same features she had at 10."

Dad Darren, who works in construction, recalls her generous spirit.

"As bad as she would get she would give you anything," he said. "If you wanted or needed something she would get it for you. She was never selfish, she would always think of others before herself."

Demi-Leigh was not defined by her illness, but by all the lives she touched.

"She made 20. It was 20 lovely years with her," said Kerry. "She just couldn't do it any more.

"It was devastating. But we aren't focussing on the illness because it wasn't her. She never let it define her, she was much more than that. In 20 years she touched so many people's hearts and we have to draw strength of that. She was something else.

"I always called her my angel. She was my angel.

"She passed away here with us. It was on her terms and how she wanted, at home with her mum and dad peacefully.

"She was an inspiration."

One day the family hopes that Demi-Leigh's condition will help others in future, and a year ago she signed up for The 100,000 Genomes Project which aims to help find causes of rare illnesses.

It could take years for that to happen, but her legacy may well be further reaching than can be imagined.

Demi-Leigh's funeral was taking place in Telford today and those attending were asked to wear a splash of yellow, her favourite colour.