ECHUCA’S Shari Butcher wants children to be able to Breathe Easy.
The 28-year-old, who has Cystic Fibrosis, knows a cure might be out of reach for her generation but it has not stopped her fighting for everyone else.
Shari has raised almost $60,000 for CF research and with another one of her Breathe Easy cocktail parties just around the corner, is showing no signs of slowing down.
‘‘What I am doing for research now might not necessarily help me but my phrase is ‘to create a future for the next generation’,’’ she said.
Shari has been fundraising for CF research since 2015.
CF, which has no cure, is a life-threatening genetic condition that can seriously impact the lungs and digestive system. Almost one million people in Australia carry the gene with one child in 25,000 born with the condition.
The daughter of Darren and Dianne Dean, and wife of Callan Butcher, Shari’s disease took a turn for the worst earlier this year when she was hospitalised for the first time.
‘‘I had a pretty busy year last year so my health took a back seat,’’ she said.
‘‘So in March, when I was admitted to the Alfred hospital for 10 days, I got to see a different side to CF care. It gave me a new-found appreciation of how lucky I have been to be well and able to manage my condition by myself.’’
Fortunately Shari has been doing much better since March.
Not long after leaving hospital she started working at Echuca Regional Health as an executive assistant to the corporate team while also managing the volunteers.
Now her lung function, which at its worst was between 66-68 per cent, is at 76 per cent.
‘‘Over time I’m going to get progressively worse because it’s a degenerative disease,’’ Shari said.
‘‘But what that means for me is that it’s very important I try and remain consistent. When my health goes up and down it causes more lung damage.
‘‘So now I am back to where I am I need to keep myself there — 76 is probably as good as it will ever be — so it’s about maintaining that.’’
Which isn’t, by any means, easy.
‘‘I have to do physiotherapy twice a day which involves a nebuliser and this little machine that helps clear the mucus so you don’t get chest infections,’’ Shari said.
‘‘I do that morning and night for 20 minutes. It’s really tiring, like coughing all the time. I get bruised ribs and sore lungs but it helps.’’
Physiotherapy aside, Shari takes 30-40 tablets a day.
‘‘I suppose I always try to be proactive to my condition as opposed to reactive. It’s about trying to keep as well as I can all the time,’’ Shari said.
Life expectancy for someone with CF is 37 but Shari says everyone is different.
‘‘One thing we all have in common is that CF is invisible,’’ she said.
‘‘No-one can see that you are living with this chronic health condition that needs a lot of support.
‘‘The money they’ve been able to raise to date has allowed some amazing things. The fact they’ve been able to find medicine/treatment that can help a percentage of people with CF, that wouldn’t have been done without all of us raising money. Even in my 28 years there’s so much that has advanced.’’
Which is exactly why Shari will keep doing what she’s doing.
‘‘I don’t like it (CF) stopping me do anything. I try and have a really positive outlook,’’ Shari said.
‘‘I feel like I’m as normal as anybody else — I’ve just got this other aspect of my life that I have to manage.
‘‘And while I am able, I want to do as much as I can to help our CF community.’’
That’s where the Breathe Easy cocktail party comes in.
VIP tickets for the August 12 event have already sold-out but there are still general admission tickets available although they are selling fast.
General tickets for the party at Radcliffe’s cost $110 and include drinks, entry, entertainment from Essence Duo, finger food, a massive silent auction and more.
‘‘Let’s get dressed up for a fun night out with friends to raise funds for a cure,’’ Shari said.
‘‘We like it to be light on formalities but we do have a guest speaker who has two kids with CF.
‘‘What we really want is for people to just be there and support the cause.
‘‘This year for the first time we’re giving money to the Alfred hospital because they helped me so much when I was in hospital.
‘‘People have been so generous and the community has been so amazing in how they’ve supported us.’’
■For information visit Breathe Easy on Facebook, and to purchase your tickets visit stickytickets.com.au/53106/breathe—easy—cocktail—party—2017.aspx