Fundraising and awareness

One aspect of being a CF parent that I have noticed is very common, and I can completely agree with, is that for the first twelve months or so, you aren’t interested in anyone else but your own little family.

Being members of CFWA, they give you the opportunity to get in contact with other CF families. As it turned out, we actually knew someone whose son has cystic fibrosis, and is only about a year or two older than our son. We always knew that he was sick, but we didn’t know until after our own diagnosis that it was because of CF. So having someone there who understood has been great.

But in those first twelve months, I think the shock (and I guess, trauma) is still raw, and you honestly don’t feel like meeting anyone else. You are so tied up in your own little world.

Once that period is over, you have routines in place, you are confident with what you have to do and deal with. Now, I am one of those people who want to raise awareness of life with cystic fibrosis.

27th May is 65 Roses Day, named after the story where a child couldn’t pronounce the name of the disease.It is the day where we raise money for CFA and awareness of cystic fibrosis. There is a song called “65 Roses” by the Wolverines (I hadn’t heard of it until my son’s diagnosis…actually, I still havent listened to it, but all the older members of the family knew of it.) I will put the lyrics to the song at the end of this post.

This is the first year that my family and I are going to get involved. I have always wanted to do something, but never really knew what to do.

As my parents own a retail store, they are throwing a big barbeque out the front on the day. I am approaching local businesses to see if they can donate produce or services that can be used in a raffle, and I am going to approach some florists to see if they will donate some roses for us to sell. The paper is going to run a story about our son, and advertise the fundraising we are trying to do.

So, if you are in Albany on the 27th May, 2011, head down to Western Workwear and Safety, on Chesterpass Road, join in on the fun, grab a bargain, and help us to raise money toward families dealing with cystic fibrosis

“65 Roses” by the Wolverines

When I was just a small child, my mum and daddy came to me,
They sat me down and told me of the flowers my sister received.
Sixty-five roses with yellow and red,
Made her so tired she had to stay in bed.
I just couldn’t believe the flowers my sister received,
Made it so hard for her to breathe.
Why did she have sixty-five roses?
Must be her birthday today.
She must have been good to get sixty-five roses,
What can’t she come out play?

Sixty-five roses, with yellow and red,
Made her so tired she had to stay in bed.
I looked all around, but I couldn’t find,
The sixty-five roses were all in my mind.
I’ve thrown up and I see that,
The only one thinking of roses was me.
And the reason that the sixty-five roses came,
Was because I was too young to understand the name.

Sixty-five roses, cystic fibrosis,
Made her so tired, she had to stay in bed.
Sixty-five roses, cystic fibrosis,
I wish she had roses instead.
Sixty-five roses, cystic fibrosis,
I wish that she could come out to play.
Life, one supposes, is no bed of roses,
I wish she had roses instead.

Wish she had roses instead,
(Sixty-five roses, sixty-five roses,
Sixty-five roses, sixty-five roses).
Wish she had roses instead,
(Sixty-five roses, sixty-five roses,
Sixty-five roses, sixty-five roses).
Wish she had roses instead,
(Sixty-five roses, sixty-five roses,
Sixty-five roses, sixty-five roses).

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