heartuponhersleeve:

Dear lovely twitter followers, tumblr followers, friends, family, complete randoms and even haters…

I have come to the point of needing to address this with all of you. I only ask for you to FINISH READING this post and decide your next actions.

There have been many heartbreaking and devastating events happen this year..and I’m not talking about Julia Gillard becoming Prime Minister (although that was pretty dodge of her haha..)
But right now I am talking about the things that have happened more closer in our personal lives, with our friends and family, our health, emotions, life, relationships, etc.. The things that have affected us in emotional ways which we never would have asked for.

We’ve all lost people close to us.

For instance, the Matthew Appleby case which happened a few weeks ago… I say this with complete empathy for all of you who have known him, and for his family - that I’m sorry. I say this because I know from first hand experience what it’s like to lose someone that way. My cousin who was the closest relative to my age, Christopher, drowned in a lake when he was swimming a few years ago. He was found unconscious, rushed to hospital, but they couldn’t revive him. He lost his life 2 days later.

It hurts to lose someone close to you. My Grandfather died from Tuberculosis. Grandma remarried, and my step-Grandad died from lung cancer which spread through his body. My Grandmother was widowed twice in 10 years. So I grew up without a grandfather. Actually, I had my dad’s father, although he used to hold my head under water for the fun of it. He’s changed now, but I didn’t see him as a grandfather until recent years.

We are always hearing of suicide cases. I don’t think suicide should ever be joked about or taken lightly. It is more than serious. My cousin, Craig, put a gun to his head years ago. He left a pregnant girlfriend who was really a psycho, moved to Sydney, and now no one can get in contact with her or her son - who is half of my family’s blood - his name is Adam. I met him once when I was about 9. I wish I could see him again….

Another cousin of mine woke up on her 18th birthday, helped her family set up for breakfast, but then she felt sick and needed to lay down. She wasn’t awake after a few hours, so her mum went to get her up..she was found dead… She had suffered a heart condition and it took her on her birthday.

My great Aunty had a blood vessel explode in her brain. She was in a coma in hospital for 7 years. It was such a strange concept for me for see her alive, but not able to wake up out of this horrible thing. She passed away recently and I think less than 2 months later, her daughter passed away too. I can’t imagine how my Uncle would have gone through - his wife (his love and companion) and then his daughter….

These stories I have told you are things which have affected me and my family greatyly. Some of them were entirelyPREVENTABLE , others weren’t.

Now I want you to think about this - how many opportunities in your life do you take to help someone in need?

The stories I have just told you are proof that we need to stand up to help those who need it.

I’m not saying any of this to upset you, or for you to feel sorry for me. Instead, I want you to realise that life is so tenuous and precious, and that you need to cherish it. And I guess I’m hoping that the fact that there is a way we can help save a life, might really mean something to you.

I’ve not only seen so much of my family suffer, but I see people suffering every single day. So many people don’t even think twice about the things the people around them are going through at this current moment in time.

So why can’t we join together to help someone else, prevent another loss?

Now, some of you may know him - some may not. My boyfriend is a lovely young man by the name of Aaron Lee North - @northiemusic. He is so full of compassion for others..and he is full of passion for life, the people all around him, his friends and fans and his family. He is an encourager, and he cares for people so much… He is amazing and I know he doesn’t try to wear me or others down with how sick he is. But on the inside, he suffers a very rare and possibly fatal blood disease, PNH. I see it as similar to Leukemia, although it isn’t cancerous, and it is to do with the red blood cells and probably has some other symptoms as well. Aaron is one of less than 100 people in Australia with this disease. I realised last week the effects it has on him. He is so tired ALL the time, he is sometimes so weak and fatigued that just walking up stairs can bring him close to passing out. Viruses and illness hits him harder than it hits most of us — earlier this year, the day before he was to fly up and see me, he ended up in hospital and only expected to be there overnight. He had to stay for 2 weeks. And knowing how much pain he was in was just horrible. He is pretty much relying on blood transfusions for his everyday strength.

I only want to see him healthy… But there’s only really one way for that at the moment…please read on…

HERE IS THE MOST IMPORTANT PART OF THIS POST—-
There is only ONE effective treatment for Aaron’s disease which is potentially the only thing that is pretty much guaranteed to keep him and other sufferers ALIVE! Its called Soliris. It costs almost half a MILLION dollars PER PERSON, PER YEAR for this treatment.
Aaron was funded Soliris for his life, until the government had to cut it short because it hadn’t been passed on the Life Saving Drugs Programme in Australia. So they gave him treatment until March.

Petitions started, and many of you helped out to get the awareness for the funding of the treatment, although we’re drawing to a close of 2010 with no such luck. The only way to get their real, full attention, is to send them letters. At the bottom of this, there is a letter you can print out, with addresses to send it to. ONLY THING I AM ASKING YOU TO DO IS PRINT IT OUT, SIGN IT, AND SEND IT TO YOUR MEMBER (OR YOU COULD EVEN PRINT OUT A FEW AND SENT THEM TO EACH MEMBER AND THE PRIME MINISTER)—— YOU CAN WRITE YOUR OWN PERSONAL MESSAGE, OR USE THE TEMPLATE AT THE BOTTOM OF THE PAGE ——- IF::::: you don’t have a printer, envelopes or postage stamps, please email me at kayteefaulkner@gmail.com and I will send you some for you to sign and post.
YOU CAN ALSO SEND EMAILS TO THE MEMBERS EMAIL ADDRESSES WHICH YOU’LL FIND AT THE END OF THIS POST AS WELL.

This means more than the world to me. I have seen so many things happen to people close to me - a lot of these things weren’t preventable. This one is. Please take 5 minutes to help make a change.

I love you all so much..
Love,
Your Kaytee xx

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Email: Nicola.Roxon.MP@aph.gov.au   as well as printing hard copy and post it.‬
‪ ‬
‪Change the name and address details and email & post to:‬
‪ ‬
‪Julia Gillard (Prime Minister)‬
‪Website link to submit emails:‬
‪
http://www.pm.gov.au/PM_Connect/Email_your_PM‬
‪PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600‬
‪Fax:
(02) 6273 4100‬
‪ ‬
‪
Wayne Swan (Deputy Prime Minister and Treasurer)  ‬
‪
Wayne.Swan.MP@aph.gov.au ‬
‪PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600‬
‪Fax:
(02) 6273 3420‬
‪ ‬
‪Penny Wong (Minister for Finance and Deregulation)‬
‪Email from web page:
http://www.aph.gov.au/senate/senators/homepages/contact.asp?id=00AOU‬
‪
PO Box 6237, Halifax Street
Adelaide SA 5000
‪

MESSAGE TO PRINNT AND SEND::::::::::::

Date
The Hon Nicola Roxon MP
Minister for Health and Ageing
Parliament House
Canberra ACT 2600
Fax: (02) 6273 4146
Email: Nicola.Roxon.MP@aph.gov.au

Dear Ms Roxon,

The PNH Support Association has advised me that in August 2010 the PBAC has once again recommended that Soliris be funded under the Life Saving Drugs Program. While I appreciate that the necessary processes for the Government to consider funding are currently being undertaken, I am writing to you to express my disappointment at the length of time this is taking.

I cannot sit and watch while my good friend, (add in name) suffers any longer knowing there is a life saving treatment ready to go. Your Government prides itself on providing world-class health care to Australian citizens yet young lives are currently hanging in the balance while the Government fails to finalise this funding decision.

As part of the PNH community I am angered that patients cannot look forward to a happy Christmas, as the life saving treatment they all desperately need has not been funded. Nor is there any indication as to when it will be considered for funding. It is simply not good enough. These are human beings and they deserve better.

When will this matter go to Cabinet and a final funding decision made?

I have been informed that Linda Charlton and Jennifer Sturrock of the PNH Support Association will be in Canberra during the next Parliamentary sitting beginning 15 November 2010 to give a voice and presence to the hundreds of Australians affected by this issue.

I implore you to take some time to meet with Linda and Jenny to discuss when treatment will be made available and reassure the PNH community that families will not be left fearing for their loved one’s life this Christmas.

Yours sincerely,

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(Source: thecoastofsomewherenew)