Heart-breaking diagnosis

A 13-week-old Auckland baby is living with two genetic disorders so rare they affect fewer than one in every 10 million people.

The first sign of trouble emerged when Ayla-Jean Beckham was spotted making ‘‘jerking’’ movements at 2 weeks old, mother Jordan Abraham said.

Now the baby is living with disorders that will affect her ability to walk, talk, see and eat for the rest of her life.

A few days later, Ayla-Jean’s eyes started moving ‘‘rapidly’’ from side to side and her mother knew something was wrong.

Abraham immediately called the health line. The operator called an ambulance, which rushed the child to hospital.

Ayla-Jean’s first seizure happened in the emergency department. She was transferred to Starship Hospital where more tests were done.

At 3 weeks old, Ayla-Jean was diagnosed with Aicardi syndrome and Opsoclonus Myoclonus syndrome (OMS), Abraham said.

According to the National Organisation for Rare Disorders (NORD) website, Aicardi syndrome is an extremely rare genetic disorder. The website estimates there are 300-500 cases of Aicardi syndrome worldwide. OMS is a rare neurological disorder that affects one in a million individuals worldwide, the website says.

Because she had both disorders, Ayla-Jean’s specialist said her case was rarer than one in every 10 million people, Abraham added. She and partner Rocky Beckham were ‘‘broken’’ when they found out what Ayla-Jean was suffering from.

‘‘We don’t care about the syndromes, we don’t care what she will look like or how she will develop. We care about helping her develop, and finding the things that will help her.’’

A Givealittle page has been set up by Abraham’s sister to raise funds for whatever Ayla-Jean may need and accommodation closer to the hospital.