Ms Oswald-Sealy was diagnosed with motor neurone disease last October. 

The Albury resident, 43, fears what the disease is doing to her body and what it means for her loved ones. 

She celebrated her two-year-old daughter Jessica’s birthday last weekend with her husband Jim Browne, but couldn’t help but think about what the future may hold. 

“At her birthday, I thought about ten years down the track and whether I am going to be there.”

“There are certain things that I’d like to see Jess do,” she said, fighting back tears. 

Motor neurone disease is a group of disorders that affect cells controlling voluntary muscle activity. 

It is a progressive, terminal disease which has no cure. 

It affects the muscles which enable people to move, speak, breathe and swallow, and leads to the weakening and waste of muscles, and eventually death. 

Ms Oswald-Sealy first started noticing problems in her hand in 2008. 

The keen snowboarder, mountain bike rider and firefighter thought an old sports injury may have flared up and doctors looked at several possibilities for the changes. They initially thought the problem was limited to her hand and would not spread, but after the birth of her daughter, Ms Oswald-Sealy began to notice the disease affecting different parts of her body. 

“I’ve spent my whole life trying to live in the moment and have different adventures,” she said. 

“Since I’ve had Jess and had this disease, it’s really forced me to pull back and be in the moment. 

“That’s something I was never able to do before. 

“That’s kind of a positive. 

“I guess people just deal with what they’ve got to deal with.

“It’s weird having to concentrate on things that you just automatically did.”

The disease has left her unable to open packets and cook meals, and she fears it won’t be long until she is unable to pick up her daughter. 

Ms Oswald-Sealy’s parents and sister moved from Sydney to Albury to be closer to her, and her mother Jennifer has noticed a change. 

Her husband said it was hard to see someone he loved struggle with the disease, but said both were living in the moment and taking each day as it comes. 

“There is a fear; the outcome is not good but we can’t just focus on that too much,” he said. 

“I don’t think any day for any person is a given, anything can happen to anyone at any time. 

“Being in the emergency services, we see people out on bad days and we see how things can quickly change in people’s lives. 

“We’re just trying to remain positive. 

“It’s hard to see but I can’t do anything to stop it or help. 

“I can help physically, but to watch her come from being an elite athlete to where she is at the moment is unbelievable.” 

The couple, who are both professional firefighters, met in 2003 through work.

Motor neurone disease initially had only a minor impact on their lives, but Ms Oswald-Sealy’s has slowly needed more support as the disease progresses. 

She has been unable to return to work since her daughter’s birth and the couple recently renovated their East Albury home to allow for future wheelchair access. 

“We’ve got to think a lot more about what we do these days,” Mr Browne said. 

“We can’t run off and do things, there’s a lot more planning." 

The couple both welcome the ice bucket challenge as a way to raise money to combat the disease, and several of Ms Oswald-Sealy’s friends have taken part. 

A quick internet search shows the immense popularity of the fundraiser, with 154 million results on Google and 91 million video results as of Thursday. 

“I think it’s pretty amazing,” Ms Oswald-Sealy said. 

“It’s sounds like they could really do with a huge influx of cash into their research.”

An Australian Institute of Health and Welfare report from 2011 estimated 1900 people in Australia were living with the disease, with an incidence rate of 3.5 per 100,000 people each year. 

According to MND Australia, Australian donations have reached $1.5 million. 

Ms Oswald-Sealy had initially kept the disease quiet from people, but said and the ice bucket challenge had helped spread awareness. 

The support of her family has helped make her life easier. 

“Having the support of my family has made me feel a lot less disabled than if I didn’t have them,” she said. 

“If I was trying to do it without them, I would have had to have carers come in and help a long time ago.” 

Despite the affliction, the couple are staying optimistic. 

“We’re both positive people,” Mr Browne said. 

“We’re just trying to get through each day, we’re trying to make the most of each day. 

“Jess has only just turned two and it will be nice to see her and Tonia grow together and have a bit more of a future.”