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CF Wonder Drug

There have been some amazing developments in treatment of cystic fibrosis over the last few years, changing the lives of those living with the condition.

kalydecocollA couple of years ago, the world exploded with the release of Kalydeco. It was a drug aimed at certain CF gene types (there are many types out there, so this drug wasn’t suitable for everyone)¬†

It is a little pill that treats the underlying cause of cystic fibrosis rather than just the symptoms. The results of the drug were ground-breaking and life changing. People taking the drug were showing lung function improvement of up to 65% and had a new lease on life.

The downfall of such an amazing drug was the price. The cost of Kalydeco was around $300,000 a year! It simply wasn’t affordable.

After much lobbying and petitions, the Australian government approved Kalydeco on to the Pharmaceutical Benefits Scheme (PBS) which caused a sigh of relief around the country as the drug became much more affordable.

orkamabiFast forward to 2016, and another drug has hit the market. This one is called Orkambi, which is aimed at another gene type. Our family is excited about this one as it is aimed at Cameron’s gene type! This drug is expected to help almost half the Australian CF population. It has similar effects as Kalydeco

Again, the downfall is the price. Orkambi is currently about $260,000 a year!!

There was a recent petition to have it placed on the PBS list to make it affordable for everyone. However in the “wisdom” of the Australian government, they REJECTED the bid, claiming it was not “cost-effective”.

I don’t understand how they could think this? It is improving quality of life. It is improving health, which means less of other medications, less treatments, less time in hospital. Surely that all adds up in the end?

price

How much? Too much!!

So the petitions are starting again. Click here to sign and help show your support.

This drug is important and needs to be made more affordable! Lives depend on it!

Bella ūüôā

Are we really that different?

Time to jump back on the soapbox, grab my hubby to join me, and express our opinions to the world…

Every election, an “old” highly debated topic pops up. Same sex marriage.

Should it be allowed? Should it be outlawed? Do we have the right to dictate how other people choose to live their life?

The answer to that last question is…NO!

We live in a free country, where the choices we make in life, in regards to our sexual preference, shouldn’t open to debate. We should be allowed to be who we are without prejudice, and not be influenced by religious beliefs.

We bring you here today...for equality!

We bring you here today…for equality!

You can argue that love and marriage should be shared be between a man and a woman, but not everyone is the same. Our differences are what  make us individuals. Why should these people be open to prejudice and ridicule?

These certain people are just trying to express their love in the same way as everyone else. Who are we to deny that?

Will a same-sex marriage affect your own marriage? No! Will it affect your day-to-day life? No!

If you are against same-sex marriage, will you like it? Obviously not! But ¬†there are always thing happening ¬†that we don’t necessarily agree with or stand for, but are beyond our control. People should not…can not…be denied their freedom of choice regardless of religious or other beliefs.

We have a lot of friends who are in same-sex relationships, and are desperate to make the next step with their partner. They take their relationships very seriously, more so than quite a few other friends (and celebrities!)

We all crave that deep connection with someone meaningful. Everyone should be allowed to express this equally…without damnation.

Although this post is short and highly debatable, the points we need to remember are “Does is affect us as individuals?” and ¬†“Does religion have a place in politics?”
We live in a country based on the freedom of choice, and at the end of the day, “they” are our own, and should be cared for as such.

Bella and Mark ūüôā

Take a step back!

Both hubby and I are AFL (Australian Rules Football) followers, majorly supporting Hawthorn Football club. This is a topic I wouldn’t normally talk about, but it is a joint rant from the both of us.

If you are an Australian, it is pretty hard to miss the headlines at the moment about drug doping in the sport, with one particular club under fire, and this post is mainly about the broad brush at the moment that is used to paint negativity over the entire Australian sporting fraternity.

The media, like always, have blown this issue completely out of proportion, with a lot of finger-pointing at a lot of players and clubs who are probably innocent.

A majority are having their clean images tarnished because of the actions of a few.

drug dopingNo, we don’t want to see drug use and match fixing in Australian sport, and this in no way excuses the actions of those who are guilty. But we need to remember that the majority who are not involved should NOT be painted with the same brush, and should not be viewed with suspicion with they are adamant about their innocence.

The media and public need to take a step back, take a breather, and let the police, and other involved agencies do their work and filter out the real perpetrators!

Australia has always maintained a “holier than thou” attitude when it come to doping. We don’t want all Australian athletes viewed with negativity from around the world. Not all players/athletes are under the influence. The fingers shouldn’t be pointed at all of them because of one idiotic choice made by certain high-profile sportsmen.

When it comes to match fixing, we need to remember that where there is money, there is manipulation! Although we don’t believe this is as rife in Australia as it is in other countries (**cough, cough….South Africa …cough, cough **) the window is open and no one is forced to place bets on games, as the game can be enjoyed without it.

We have serious concerns how the AFL season, which is due to start soon, is to be effected by these allegations. Will winners be declared cheaters? Will losers be declared as “tankers”? Will injuries be viewed with suspicion? Will athletes ever be able to play comfortably without constantly looking over their shoulders or constantly questioning their medical staff’s intentions? Will coaches and managers ever be able to trust their player’s word?

It’s time to take a back seat and let the cards fall as they may. Attack those who have been found guilty later on. Let everyone else get on with the game!

Bella and (for the first time as a guest) Mark ūüôā

Back on the soapbox…

I have had enough of some of the comments I have been seeing on Facebook lately.

David Koch

David Koch

An Australian celebrity (known as Kochie) is well-known for sticking his foot in his mouth on certain topics. I really feel sorry for him at the moment with how much he is getting verbally attacked by people (mostly women) because of comments he made on air about a woman who was asked to move by staff because she was breastfeeding on the edge of a pool.

Now many are saying that he is anti-public breastfeeding!

From what I understand (without having seen the interview in question) he was actually saying that women should be discreet (he just had a poor choice of words) when feeding in public, not that he doesn’t think that they should!
He also stated that he felt it was unsafe for a woman to be feeding on the edge of a pool (umm…YEAH!!! So many scenarios of what could go wrong there!)

I actually agree with his opinion (and we are all entitled to one!) I have no problems with women who choose to breastfeed, nor anything against those who feed in public. Kid’s gotta eat! What does make me uncomfortable is when I see a woman who just flops herself out for the world to see. Nobody needs to see that. In fact, if there wasn’t a child in close proximity, you could get arrested for indecent exposure!

What pisses me off (sorry, I know I don’t swear on here!) is that these women (who I call the “breast feeding nazi’s”) are so quick to jump down someone’s throat about the subject without actually thinking about the context of what was said. These are the same women who attack people,¬†like myself, who choose not to breastfeed (or can’t!) and make them feel like scum.

It’s disgusting that this is even such a heated topic. Personal choice people!!!

Look!! It is possible to be done discreetly! You can see bub, bub can see you, no suffocation, no exposure! Why the drama??

Look!! It is possible to be done discreetly! You can see bub, bub can see you, no suffocation, no exposure! Why the drama??

But IN MY OPINION… yeah, your concern for your child’s hunger is legitimate, but show a bit of consideration for your body (and others) and be a bit discreet. Feed, but don’t flaunt! It could make people uncomfortable and we also live in a world of creepy weirdos who will not look on and see the sake of practicality, but watch in a sexual way.

Again, without having heard the original story that sparked all this, who knows the details behind the woman being asked to move away from the pool. Ok, she shouldn’t have been moved on just for that (if that was the case), but maybe this woman jumped on her high horse about being asked to move and approached the media, when maybe they just asked her to move because she was in a dangerous position?? Everyone seems to have forgotten the original story and all the limelight is on Kochie! If this place really did break the law and ask this woman to move on just for the simple fact she was breastfeeding, why aren’t you all attacking this business instead?

Call me a prude…whatever…just be certain of facts before jumping down people’s throats, and MOVE ON!!!
Bella:)

Things I have learned since having children

All mother’s learn “tricks of the trade” as time goes on. I have called on the help of some of my mummy friends to come up with some little ideas for new, first time mums.

Keep a change of clothes for yourself  (and bub) in the car at all times.

Spares never go astray

I have lost track of how many times I had to run into¬† a clothing store when I was in town to buy a shirt because of one of the three embarrassing baby “P’s” (poop, pee or puke) Then there is the worry of breast milk leakage…yup…I have had the embarrassment of a wet circle around my chest in public, which resulted in bub being carried until a change of clothes or calling quits and heading home earlier than anticipated.

I have had some parents say that they forgot to bring baby clothes with them at some stage. Its seems obvious to take baby clothes in your change bag, but it can be forgotten with the “baby brain” we all suffer in those first few months (or years….)

 

Essentials for every handbag: wipes, band aids and stickers!

I used to (and still do!) keep a pack of wipes in our change bag, handbag (since the change bag didn’t¬†come everywhere), and the glove compartment of the car. No matter where you are, or what you are doing, you should never get caught out, whether it’s a nappy change or wiping up sticky messes after ice cream at MacDonald’s.

For all scrapes and bruises

Band aids are always handy because they make everything better! A stubbed toe can feel better with a band aid, but then there also times when there may be blisters caused by shoes, or scraped knees falling over in car parks.

Don’t forget stickers, because any child can be bribed with the promise of stickers. I quite often use this piece of bribery to get the kids away from those blasted rides (you know the ones, the cars that bounce up and down, or trains that go round and round) that are always parked out the front of shops to drain parents of any coins that might be hiding in the depths of their purses.

Find a GP who will listen to you.

A doctor you trust is essential

Good doctors can be hard to come by. Find one who will take you seriously if you take your child in when your gut is telling you that they are ill. No-one knows a child better than its own¬†mother. But you also want a doctor that isn’t¬†afraid to tell you that the sniffles are just the sniffles and you need to relax. It’s a little contradictory, but you need to be able to trust your doctor to take you seriously and tell you the truth.

 

 

Sleep whenever you get the opportunity.

Sleep when the baby sleeps. No-one cares about the housework, catch up on it later. A¬†dirty house is better than an axe-weilding maniac! Those who pass judgement probably havent had kids and aren’t worth the time…they will soon learn.

Sleep is your friend!

Call on family members. I bet they are more than willing to help out (Well…people going¬†ga-ga over a baby can be helpful at times!)

Sleep as much as you can in hospital, it means that you will have more energy to deal with things when you get home, because I’m warning you now, the first night home is generally a nightmare (though it usually settles very quickly)

Depression isn’t weakness.

Never be afraid to ask for help!!

It happens to the best of us. It doesn’t¬†mean that you don’t love your baby. It doesn’t mean that you aren’t doing a good job. Parenting is hard. Find someone who¬†you can vent to…or write a blog (it certainly helps me!) and never be afraid to ask for help. It is normal for your moods to be all over the place for a few weeks after birth while your hormones settle. But if the feelings of sadness or hopelessness (amongst other symptoms)¬†continue, see your doctor. Check out www.beyondblue.org.au for more information.

Don’t forget, fathers can get postnatal depression too!

No book has all the answers.

There is no such thing as a baby "Bible"

Some parents have huge expectations of how their baby is going to be once born. They aren’t¬†going to have pacifier at all, organic cloth nappies only, and of course they are going to sleep straight through the night instantly. It’s these sort of people who experienced parents sit back and look at, giggling inside while thinking “Well you’re in for a wake up call!” I have met expecting mothers who have found a certain book and swear blind that they are going to follow every word and their baby will be perfect, only to be dismayed when their baby had other ideas.

Allow your child to have some time to work out a bit of a routine. You can slowly guide them towards one, but don’t expect instant results. If you make a decision on how to do something, then stick by your decision. Don’t allow yourself to get bullied by others to do things their way (for example, the breast vs. bottle debate I touched on recently) What works for others may not work for your family. Allow time to figure it out!

Run fast, run far!Now finally, I asked my husband for some tips for upcoming first-time dads, and what do you think his little pearl of wisdom was??

¬†“RUN!!!!”

Breast vs. Bottle debate

Wow can this topic can be a heated one! After reading a funny blog on this debate, I thought I would share my side on it.

I decided, before my first was born, that I would bottle feed my babies. I have absolutely nothing against breast-feeding mothers, but this was a personal choice. While being bottle fed, my children were still getting breast milk which I was expressing.

You are always told breast is best, and I wanted my children to have the benefits of breast milk. But I wanted to keep an eye on my supply. Apparently it took medical professionals a few months to realise that I wasnt getting enough out of my mother’s milk. I remember being told this when I was younger, so I always had this worry that I too would be like this. A part of me is glad that I did this, because I had an incredibly low supply (which got slightly better with each child, but was still always poor). My eldest son was never able to have a full feed of breast milk. Within a couple of weeks, I caved and turned to formula. It hit me hard.¬†I was devastated.¬†I felt like I couldn’t provide for my son. I now realise that breast-feeding nazis ,*ahem*, protagonists, put such a social stigma on new mothers, that I felt like a failure for being physically unable to produce milk. I tried everything under the sun to help boost supply, to no avail.

But once we turned to formula, my were children settled for longer, grew normally and didn’t suffer any ill¬†health. The one time that each of my boys were hospitalised with bronchiolitus…guess what! They were still drinking breast milk!

Now, I hate this crap “benefits” excuse that breast-feeding helps you bond with your child. Sure it does, but it didn’t stop me from bonding with my children. It also didn’t stop them bonding with their father! I wasnt obligated to get up in the middle of the night for every feed. I could nudge my partner in the direction of the bedroom door when I was too exhausted to move. It also helped with the bonding with grandparents, who were great babysitters when I had to work (oh yes…Im one of those terrible working mothers too!)

Sure, breast-feeding means there are less dishes…but what is an extra couple of minutes at the sink? I sure as hell didn’t spend hours there! But what about those breast-feeding¬†mums who have to express to relieve themselves? Do they have less dishes? Not really.

I have to say, I also enjoyed being able to have the occasional glass of wine, or not having to worry about what any medications may pass through the milk to my child, or being able to eat what I enjoyed without having to worry about upset tummies.

While in town, I¬†didn’t have to stop what I was doing to sit somewhere to attach to my child, or worry about embarrassing other shoppers by possible boob exposure. I could pop a bottle in and continue to push around the trolley or pram. Day time hours can be precious to get things done!

Also, breast-feeding can hurt! Yes…I at least tried it. I was one of the lucky ones, it came easily and I felt no pain (unlike other mums) but mastitis, cracked nipples, thrush…eek!

Breast feeding saves money. Yeah, probably. But I constantly felt starving while expressing my breast milk. Any money saved on formula probably went towards the food I ate! I have to admit, that was one thing I missed when my cystic fibrosis son ended up on a special prescribed formula for his weight…it was only costing us $5.30 a month. So when he no longer needed to be on this formula, I was disappointed when it became $15 a week.

It may seem that I am attacking breast-feeding mothers, but please don’t take it this way! It is the female body’s natural function. Like I mentioned before, it was a personal choice for me. Most bottle feeding mothers having nothing against breast-feeding mothers. It’s just a pity that so many breast-feeding mothers can’t be as accepting. It really angers me to see people jump up and down about bottle feeding parents. Why put them down? The babies certainly aren’t suffering! I hate hearing about how formula should be prescribed. Why take the choice away from parents?

Promoting breastfeeding as being best is fine, but having a go at mothers who bottle feed is not.

 

Bella ūüôā

 

 

15 movies to make you cry

My husband is away for the next four weeks, so I am busy stockpiling our movie supply to keep me occupied, mostly at night when kids have gone to bed.

I was in the mood for drama today, and watched Life as a House¬†(starring Hayden Christensen and Kevin Kline) and of course, by the end, the eyes were glistening with tears. It had me thinking what other movies had me shedding tears. So here is my list….feel free to add your own.

**Warning, if you havent seen all of these movies, there are some spoilers written**

The Notebook– This movie had me weeping like a baby! I don’t¬†think I have ever cried so much over a movie.¬†It has an absolutely touching ending. I don’t know of anyone who wasnt moved by it!

I gave this movie to my mum for Christmas a few years back. A couple of weeks later, I get a phone call from her, sobbing her eyes out. Once she could talk, I had to laugh when she said “Thank you for the DVD!! It was a beautiful movie!”

Braveheart-¬†Anyone you knows me, knows that I am obsessed with Scotland (though, I’m not really sure why) so it comes as no surprise that this is one of my favourite movies.

No matter how many times I see it, I choke up when Murron is killed and I cry when William is executed.

 

Neverending¬†Story-¬†When Altreyu is begging for his horse to move….my god!! Bawl factor!!

Then you are just about fist-pumping along with Sebastian by the end!

 

 

The Green Mile-¬†I couldn’t believe that this was a Stephen King story. I now have the books and love them. It has a great storyline and the end chokes me up every time! I watched this movie with my grandparents, and I could see my Nanna getting a little emotional too.

Tom Hanks is one of my favourite actors!

 

Armageddon- When she is saying goodbye to her father, or rather, when he was saying goodbye to all of them…..*sob*

 

 

 

The Color Purple- My sister-in-law recommended this movie to me when we were talking about emotional movies years ago. I was heavily pregnant at the time and already having mood swings. The story takes you on a rollercoaster of emotion. Great movie!

 

 

Walk to Remember- the wedding scene…don’t know of many people who have watched this movie who havent been affected.

 

 

 

Pearl Harbour-¬†I saw this at the cinemas with my History class in highschool fo ran assignment (even though the teacher didn’t¬†do his research on the movie before organising the excursion and admitted that it really didn’t have much to do with what we were studying…its was more of a love story) But all you could hear was stifled sobs at the end.

 

Looking for Alibrandi- Again, I saw this at the cinemas and we were studying the book in English class, but you could feel the tension and sadness in the cinema with John Barton’s death/funeral (except for the bit when there is a bird’s-eye¬†view of the coffin and a confused voice pipes up from the dark “What’s that?” causing everyone to giggle!)

 

Forrest Gump- Oh my! There are too many scenes in there that made me bawl to mention them all. It’s one of my husband’s favourite movies.

Again…Tom Hanks!!

 

 

I am Sam- Dakota Fanning is an amazing actress. Who could believe that much talent laid in a seven-year old? Absolutely beautiful storyline!

 

 

My Girl- Childhood death is always an emotional subject. All the actors in this movie did a brilliant job of bringing everyone to tears!

 

 

 

Patch Adams– You don’t see Robin Williams cry very often, but I was sobbing along with him over the death of Carin.

None of these are in particular order, though The Notebook was definitely the strongest emotional state I have ever been in! But I love each and every one of these movies. There are probably many more I can add to the list, but these are the ones that most stick in my mind.

What other movies can you add?

Bella ūüôā