For little Molly Cross, the basics of life don't come easy.

Diagnosed with the extremely rare Angelman syndrome, Molly requires constant therapy to achieve the family’s hope she will walk for the first time by the end of the year.

But the four-year-old may never be able to talk.

Molly’s condition is so rare it falls outside most funding and assistance streams, so her father Rohan Cross is gearing up for a fundraising drive this Sunday in the 10km Bridge to Brisbane run.

The money he raises will go to the Cure Angelman Foundation, set up by Molly’s mum Meagan Cross and other parents across Australia to fund research and raise awareness.

Angleman syndrome is a neurological genetic disorder, causing development delays, severe speech impairment, movement and balance disorders and seizures.

Mrs Cross is hopeful research into a cure, including the possibility of the world’s first human trials in the US next year, could soon benefit Molly.

In the meantime, the Cross family is constantly raising money and awareness for rare diseases, setting up a national support group in the process.

Mrs Cross said the regular smile on her daughter’s face disguised the serious extent of the condition.

One of Molly’s friends, a young boy a few months older than Molly also diagnosed with Angelman syndrome, died on Friday night.

"It’s hard to express what it’s like to see your child blue from seizures or wonder if the next one might be the last," Mrs Cross said.

Mr Cross said he had been overwhelmed with the support of local businesses, with Lake St cafe Ever After donating $1 from each coffee sold this week to the family.

"In the Far North there’s a huge shortfall of services," he said.

"It puts a lot of pressure on parents, it’s a struggle for us every day.

"We’re so grateful for anything people can contribute."

Share this article