Parent's 'little miracle' celebrates fifth birthday

Ella celebrated her fifth birthday in July

Parents who were told their child would not survive beyond birth have said their daughter is a "little miracle".

Ella Bevis lives with a rare genetic condition called Edwards' syndrome which causes serious health problems and can limit life expectancy.

Having just celebrated her fifth birthday in July, Ella's parents Chloe Harris and Kyle Bevis, say she has "surpassed all expectations".

Ms Harris said: "[The] consultants didn't think she'd survive long enough for us to take her home... we really have no idea what she'll do next!"

Ella's uncle, Jack Harris, will be raising money for two pivotal charities in the family's life - Julia's House and Royal United Hospitals Bath - by cycling for 24-hours straight on the 13 September.

Ella has the most severe version of Edwards' syndrome, also known as full trisomy 18.

According to Ms Harris, children with Ella's condition do not survive past the first trimester of pregnancy and if they are born alive, they have just a 13% chance of surviving beyond their first birthday.

As well as causing problems with pretty much every organ, digestion and breathing, Edwards' syndrome also causes developmental delay.

'Constantly beaming'

When Ms Harris and her husband were told Ella had Edwards' syndrome, the doctors said she was "incompatible with life".

Ms Harris said: "I remember those words so vividly. It's a label that's sometimes used for children with Edwards' syndrome.

"It basically means that if the child survives birth, they'll never be able to do anything – walk, talk, eat, and all their organs fail.

"But anyone who has met Ella knows she's the complete opposite of 'incompatible with life' - she's full to the brim with life! She's the happiest little girl you could ever meet – she's constantly beaming."

Chloe and Kyle were told Ella may not live past birth - but she celebrated her fifth birthday in July

Ella's mother said they have to be cautious about where they take her as she is so vulnerable.

The family have turned to Julia's House for help - a children's hospice in Wiltshire that provides practical and emotional support for families caring for a child with a life-limiting or life-threatening condition.

Ms Harris said: "She she tends to miss out on socialising with other children.

"So, it's brilliant when she comes to Julia's House sessions and events because she can have the best time in a safe space."

Ella and her uncle, Jack Harris, who will be raising money for Julia's House in September

Jack Harris is preparing to raise money for Julia's House and Royal United Hospitals Bath - two organisations that supported his niece.

On 13 September, the 26-year-old will be cycling for 24 hours around Melksham and aims to raise £1,000 for each.

He said: "Ella's such a happy, positive little girl. She's had so much stuff thrown at her for her whole life, and she just gets through it.

"Edward's is quite a life-limiting condition. I just want to show my support and help however I can."