Yes, cfpatient is right, might not have a cure in 5-7 years. I have heard it all before too, being 41… Excuse me while I go sit out my sentence, don’t mind me… I’ll just sit here quietly and sob.
No seriously, we need to have hope! At some point there will be a point where it really is 5-7 years, but you’ll never know when that point is till 5-7 years later! We need to live with hope! In the mean time treatments are just getting so good that life really is worth living. Imagine having migraines or chronic back pain, even insomnia… People live with these really awful conditions for a full life time. At least we are born with CF and are used to it, not like it just happened yesterday. Imagine being 100% normal and then being paralysed in an accident. You can’t live with that fear either!
I am hoping to make the first all positive documentary on CF, but who knows there is one out there already, who knows it doesn’t happen or something happens on the way and it is not going to be all that optimistic if I end up in hospital God forbid. We sure do not have the funds for producing anything at the moment. We are leaving next month and we borrowed money to buy good filming equipment. Sure the odds are against us, but hey, I am going and we will get a documentary happening!
The support team coming with me was all prepared to go self-funded even though it was going to be a struggle for us all. Amazingly we got enough community support to get their airfares paid! We totally unexpectedly got a friend in Europe lend me a brand new car, and a company I worked for in the past decided to put a banner on it in return for some sponsorship. Patagonia just came on board unofficially with a shipment of clothing for us… We are counting down to our departure and only just this morning the cinematographer confirmed he can make it! It all slowly falls in place with enough optimism, and if it doesn’t I don’t mind either.
I am getting lots of awareness just getting this far! Think of all the people affected by CF who hear about a 42 year old (after July 8) even just PLANNING to ride 4000 kms through 10 countries with 1000+ pills! Imagine if I did pull of a documentary that sold worldwide and funded MY choice of CF Research Fund by $100K+. Stuff that dreams are made of.
Walter----
PS And almost every step of the way people tell me this is bad, that is bad, should’ve done this or that, should’ve called them, should’ve, they would’ve, you could’ve… But at least I, and Leahoor, are doing it!
Mobile, AL