THE family and friends of a 15-week-old girl who has a life-limiting illness are trying to raise £500,000 for her treatment.

Inaaya Shabbir, whose mother Amber Khan, 20, comes form Accrington, was diagnosed with an extremely rare condition which causes malnutrition.

She was diagnosed with Wolman's disease, which causes malnutrition by stopping the breakdown of certain fats within the body, on January 28.

It affects just one in every 350,000 newborns.

Most children with the disease develop severe malnutrition and often don't live past early childhood.

The disease is treated with an expensive drug called sebelipase alfa, which replaces the vital enzyme she is missing.

Inaaya had been put on a course of the medication which could extend her life.

However, last week the National Institute Of Clinical Excellence (NICE) ruled it had not recommended the drug for the condition, meaning Inaaya’s treatment could be withdrawn.

Miss Khan, who attended St Oswalds and Mount Carmel schools in Accrington and now lives in Birmingham with Inaaya’s father Ibrar Shabbir, 22.

They also have another son, two-year-old Ibrahim.

The couple have now begun to raise money for Inaaya’s treatment.

Nicola Conroy, 43, Miss Khan's mother, said: “My granddaughter’s life hangs in the balance of whether the NHS will fund her treatment or not.

“It has already been refused but has now gone to appeal.

“The whole thing is tearing us up as Inaaya is just so beautiful.

“We still have many, many friends and some family up in Accrington and they have been so supportive.

“There are quite a few fundraising events been organised in the Accrington area.

“There is a sponsored midnight walk from Accrington to Blackburn arranged by Vici Beardsworth on Friday, March 24.

“There is also a fundraising evening at the Brooks Club in Accrington arranged by Robyn Helliwell on Saturday, April 29

“There’s also a lot of events arranged in Birmingham by various friends.”

Friend Vici Beardsworth has set up a fundraising page and just under £10,000 has been raised so far.

She said: “To ensure she gets the help she needs to have a long and loving life we need help.

“I ask from the bottom of my heart, if its only £1, you will be making a impact on this family, giving them the support to be with their precious girl.

“They say you can't put a price on a life, but sadly in this case you can.

Search ‘vici beardsworth’ at justgiving.com.