Mum's dream holiday hope for daughter who 'won't live to her 20s'

Alana's mother, Megan, said the condition has affected a lot of her daughter's organs

A mother of a six-year-old who is not expected to live past the age of 20 has said she dreams of taking her daughter on a holiday of a lifetime to Florida.

Alana was born with a rare genetic condition called Börjeson-Forssman-Lehman Syndrome.

Her mother, Megan, of Stanley near Ilkeston, said the condition had affected her daughter's organs and she had a brain malformation.

She wants to make memories with Alana before her health deteriorates.

Megan, 32, said: "Alana was in intensive care for six weeks a few years ago - and this made us realise how precious our time is with her, it's now or never.

"Nurses said her life would be severely altered and that is when they said we don't think she will reach her 20s."

Megan said Alana's condition was not hereditary and was a chromosome disorder

Megan said Alana, who is non-verbal, had her first seizure when she was six weeks old and her condition caused significant health problems.

"If she gets a cold it can be extremely serious and she would have to go into intensive care," she said.

Megan said the news about Alana 's lifespan "devastated us as a family".

She decided they needed to act "sooner rather than later" to plan a dream trip to Florida to make memories for the whole family while Alana is still alive.

"Alana loves swimming so I've always wanted her to swim with dolphins," Megan added.

She is fundraising to try to take Alana away on holiday while she is still well enough.

Megan said the dream trip would be a chance for her younger twin children to make memories too

Despite everything she faces, Megan said Alana was "always so happy" and described her as a "little ray of sunshine".

"Her being happy makes everything so much easier to deal with," she said.

"This is the time to make memories and reach any milestone she can.

"She's such a motivated happy little girl. She just wants cuddles all day. She loves my other two and they love her.

"It's a house full of love, it really is."

Alana with her two younger twin siblings at Christmas.