Girl, 12, baffles doctors who say she's dying - but they don't know what her disease is

An Ohio family is on a mission to make memories before a mystery illness takes the life of their 12-year-old daughter.

Doctors suspect Soraya Faruqui is dying from what appears to be a rare type of ALS which progressively robs sufferers of the ability to move, speak, eat and breathe.

Her breathing is deteriorating and her muscles are weakening with doctors still unable to offer a definitive diagnosis after years of tests.

Soraya Faruqui, front center, with sisters Yasmeen and Leena, and parents Safi and Tasha

The little girl has suffered and deteriorated since birth with a 'constellation of symptoms'

'Whether or not you like it or not, this process that's happening to Soraya is coming and it's going to take her life,' said her father Safi Faruqui.

'So we have a choice. We can either try to suck the joy out of life and get as much joy as you can before the grief inevitably comes.'

Soraya could not take a bottle and quickly lost weight in the days after her birth, with doctors discovering she was inhaling food every time she swallowed.

She suffers a 'constellation of symptoms', including global developmental delay, G-tube dependency, progressive muscle weakness, and ventilator dependency at night.

But when the Make-A-Wish foundation offered the Cincinatti family a holiday, they determined to make the most of what time remains.

Dad Safi and mom Tasha are both doctors themselves and were terrified at the prospect of taking their ailing daughter and her two sisters on a plane.

'We can literally fill two full suitcases of medical stuff, easily, when we travel,' her father said.

'So, I'm like, 'How are we gonna do this?' And Make-A-Wish was like, 'We got this'.'

Soraya chose Hawaii as her dream destination and her parents enjoyed their 'most beautiful moment ever' as the little girl triumphantly rode a surfboard for the first time.

'It was the most fun I ever had as a family,' Soraya said. 'And it was just easy.'

But she triumphantly mastered surfing on a holiday to Hawaii arranged by the Make-A-Wish Foundation: 'It was the most fun I ever had as a family' she said

Dad Safi and mom Tasha are both doctors themselves and were terrified at the prospect of taking their ailing daughter and her two sisters on a plane

Since then the family has resolved to take a trip every three months in a bid to 'suck the joy out of life'.

'We've done these little trips where we're like, 'we're going to do this',' Safi said.

'Alright, you want to go to Hocking Hills? Alright, we'll figure it out'.

'In this situation it would be so easy just to turn in and essentially just try to survive and only survive.

'But whether or not you like it or not, this process that's happening to Soraya is coming and it's going to take her life.

'So we have a choice. We can either try to suck the joy out of life and get as much joy as you can before the grief inevitably comes.'

The family remains desperate for a breakthrough that will slow their daughter's deterioration and to discover its cause.

'She is presenting just like childhood ALS without having the actual diagnosis,' said mom Tasha Faruqui.

'She knows that she's getting tired. She knows that she's getting weaker. That is also excruciating, watching her realization that things are being lost.'

'It's like being in the ocean and seeing the hurricane come from a distance and knowing that you can't stop it,' her father added. 'It's coming for you.'

The family have set up an Instagram page to document their struggle and inspire others, recently appearing at a Prolink Wish Gala in their home town.

'When Make-A-Wish came, everything changed,' little sister Leena told the crowd.

'And, our family changed in an amazing way. We started doing a lot more. Getting out of the house and trying to find joy in a dark time.'

Soraya herself took the microphone and bravely told the audience: 'I am dying sooner, but I am making memories today, so look out.'

'It's like being in the ocean and seeing the hurricane come from a distance and knowing that you can't stop it,' her father said. 'It's coming for you.'

'I say this to Safi all the time,' her mother said.

'This pain that we feel must have a purpose. If we can't figure this out, we must pay it forward. We must use it to help others.

'At the end of the day, I want Soraya's life to matter.

'She doesn't have the luxury of 'when you grow up, you will do this' and contribute to society. She's gonna make a difference now.'