It's not the response you would expect to get from a 13-year-old living with a one in three million genetic disorder which will leave her legally blind within a few years plus a series of other illnesses most families would not endure over multiple generations.

But Raymond Terrace's Madison "Maddy" Atkins is no ordinary teenager.

In addition to being diagnosed with the rare bardet-bede syndrome (BBS) - a genetic condition that affects many parts of the body including progressive visual impairment, obesity and kidney abnormalities - Maddy lives with nystagmus, body twitching and autism.

Due to her failing eyesight and inability to build or maintain strength, Maddy uses a cane for walking short distances and a wheelchair for long distances.

She was bullied at school because of her weight and illnesses.

So how do you cope?

"I've learned to adjust".

Are you scared of becoming totally blind?

"Not really. I know my way around the house like the back of my hand."

Are you bitter about what life has dealt you?

"Not on your life. I got to meet Ed Sheeran [through the Make a Wish Foundation] last year."

But Maddy does have two more wishes before she loses her eyesight - to experience the Harry Potter theme park in London and to visit Anime in Tokyo, Japan.

To help get her there, Maddy's mum Melissa Budworth and a group of friends are organising a family fun day to be held at the Clare Castle Hotel in Raymond Terrace on Saturday, July 6, from 12 noon to 7pm.

Th fundraiser will feature the live band Cruz, auctions, raffles and a host of children's activities.

Maddy's health issues began at three months old when she began to gain weight quickly.

Not long after her mother noticed the involuntary repetitive eye movements.

Doctors diagnosed astigmatism for the eyes but could not explain the weight gain.

By the time Maddy had turned six, her health complications had escalated to include hormonal issues and was found to have a duplication in chromosomes. By age 10 her eyesight began to deteriorate rapidly.

"We were sent to an eye specialist in Sydney who diagnosed retinitis pigmentosa, a rare disease which eats away the back of the retina," Melissa said.

Finally in February this year Maddy was diagnosed with the rare BBS1. "For this to happen both parents of the child need to carry this duplicated gene."

Fortunately, Maddy's 10-year-old sister, Morgan, who has been diagnosed with the same duplication has not been affected by the rare condition.

Despite her failing health, Maddy keeps a grip on things through a positive and effervescent attitude.

"I have lost my night and peripheral vision, next to go will be colours then finally my central vision," she said.

"I can see some colours but the red, oranges and pinks all merge into one, the purple and blues as well, but I am learning to adjust. The Guide Dogs have been great. I would love my own dog but not till I'm 18."

Maddy has also found peace at her new school. "I am in a multi-category support unit at Francis Greenway in Beresfield with five other students and I am really enjoying it," she said.

The family has the support of the NDIS, but this was also not without its pitfalls.

"The plan had to be redone five times in 18 months," says Melissa. "It's been pretty much a roller-coaster ride. The first plan ran out of funding after three months, we've had issues with occupational therapists and planners getting back to us because of incorrect categories.

"We finally got the necessary funding after support from both Kate Washington [State MP] and Meryl Swanson [Federal MP]."

Apart from her obsession with Harry Potter, Anime and Ed Sheeran, Maddy enjoys cooking and is working to build her independence.

"I know I have my challenges but there's still so much to look forward to," she said.

To donate, find Maddys Wish on Facebook.