Imagine not being able to clean your teeth, brush your hair or do any of those daily mundane tasks we all take for granted.

For 34-year-old Ellen, just scratching her nose or taking a sip of water without help from her husband Dean would be a major achievement.

Instead of giving up on life this brave Maitland woman continues to challenge herself on a daily basis.

Ellen was diagnosed with Muscular Dystrophy when she was 12.

She suffered mobility issues, would fall over and was weak. Despite these early challenges she played netball and took ballet lessons but as her condition deteriorated she had to rely on her family and a wheelchair for help.

While limited to what she could do, Ellen still managed to enjoy some independence, until she fell and broke her arm in 2011. “I went from being fully independent once dressed in my chair to being dependent on people to set everything up for me,” she said.

But the worst was to come. Ellen suffered an adverse reaction to her pain medication which resulted in respiratory failure and her placed on life support in intensive care. This was to become her nemesis. “The average life expectancy for someone with MD once ventilated is about five years. I hope to at least triple that,” she said.

Ellen underwent a little known method of lung strengthening her physio had read about in a medical journal. Both she and Dean convinced doctors to try it. The therapy involved Ellen’s breathing machine removed three times a day and a resistance tube inserted for her to try to breath on her own. “I was able to regain enough strength to remove the hospital machines and avoid a tracheotomy leaving me with a breathing mask,” she said.

Defiant Ellen has not let her condition beat her and last year enrolled in university to study law specialising in wills, power of attorney and legal guardianship for the elderly and disabled.

The couple needed a specially modified vehicle to help Ellen achieve her goals. They sought the help of the National Disability Insurance Scheme and were told the modifications may be covered but they must own the car, it must be under three years old and have traveled less than 30,000km. They remortgaged their house to buy a suitable vehicle but were later denied the funding due to Ellen’s “unknown life expectancy.”

With her dream in tatters, Ellen’s sister Kate Cross-Johnston and friend Georgina Grine set up a Go Fund Me page to raise the $44,000 needed for modifications. You can donate at www.gofundme.com/ellens-vehicle-modifications