'It was horrible to see' – meet the brave Kiwi baby battling two rare genetic disorders

You probably haven’t heard of Jordan Abraham and Rocky Beckham, but they're a special couple.

Not many young parents face what they've faced, a baby born with two super-rare genetic disorders and nowhere to house her.

Ayla-Jean Beckham suffers from Opsoclonus Myoclonus Syndrome and Aicardi-Goutieres Syndrome (AGS).

The syndromes affect the nervous system, and have no cure.

Thanks to Dr Adeline Vanderver, a specialist in neurological disorders at the Children’s Hospital of Philadelphia, they were given a drug to help with Ayla-Jean's AGS for free.

After writing a letter to Jacinda Ardern, Jordan and Rocky were helped to find housing suitable for the family of five, so they could live together for the rest of Ayla-Jean's short life.

Now, Rocky and Jordan want to share what they’ve learnt with other parents who face similar, seemingly impossible hurdles in life.

"Don't be too proud to ask," Jordan told TVNZ1's Marae. 

The reality for Jordan and Rocky is that even with miracle drugs and a miracle home there’s still no cure on the horizon for Ayla-Jean.

"If there’s any sign of her deteriorating then it’s morphine. It’s how she came into this world and it’s how, sadly, we want her to leave – peacefully."