Wednesday, September 7, 2016

Fundraising? Bor-ing!

Ok.  Give me one good reason why I should bother?  Huh?  I'm quite ok, thanks.

And, quite honestly, that's about it.  That's the one good reason why most of us don't bother, because we're quite ok, thanks.  We're lucky.  We live well, we eat well, we have good educations and we're doing just fine.

Well, sweeties, that's just the reason why I'm giving you a little nudge and asking you to think of all the thousands of others who don't have the same privileges.

Tell me, what was it really like that day when you first got the news that your baby son or daughter had Prader-Willi syndrome?  You couldn't believe it, right?  Well, you wouldn't believe it.  Prader-what?
One week old.  How hard I tried to make it seem normal.

For nine months you carried a different child.  One with all your hopes and dreams, the child who would be perfect!  I did that, too.  But she wasn't diagnosed until she was 3 years old, so I had 3 years and 9 months to speculate about my perfect daughter.  Wow - what a crash that was when it happened.  How the world crumbled, how darkness fell and just wouldn't lift.  How I buried myself away for years before I could face the reality of what my life was now going to be like.

I know you know this.

And I know you know, just as I do, that mothers and fathers around the world are continuing to feel that cold blast of reality as they face situations they prayed would never happen.  The despair; the anger and hatred of three little words: Prader, Willi, syndrome.  The pity from others, the ongoing battle to make it right.  The desperation to make it somehow normal.
Struggling at 5 months to lift her head

For 3 years I tried to pretend it would be all ok in the end.  That I would wake from a dream and smile to think I was so fearful.

And of course, it didn't happen.

I had to wait 3 years, guessing, hoping, crying, and hiding. I couldn't bear it.  And that was in a western country where life is comparatively cruisy. 

But many of us have now overcome that battle; accepted what cannot be altered, and learned to live with it and do our very best by it.  Time has moved on.  Diagnosis can be instant, and if not instant in your country, then free if you come to IPWSO.  Information in 15 different languages.

Many of us have gone further and become flag-bearers in organisations which offer help and support.  To be honest, I did this because had I not, I would have gone mad, or curled up and died.

But every charity needs funding and without it, we fade away, disappear.  But we owe it to every parent in the world not to do that!  So I call out to you all, everyone reading right now, and ask you, would it be too much for you to give a few dollars to make a difference in someone else's life?  To give them the knowledge that I never had; to give them hope in words of their own language... just to help someone else?  Please?
Every donation given until December 2016 will be matched by the KB Anderson Trust


  1. Thank you for donating. You are just as amazing...

  2. Amazing isn't the word ❤️
    Great piece of writing by the way.
    S xx

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