What will we do if we were told that we don’t have much time left? That the light of life will slowly be extinguishing? And there will be no room to accomplish the things we have been avoiding for long? To confess a love we held captive inside of our hearts? To roll back time to spend it with the family we had not been seeing for a long time?
One day, there will be no more time to do the things you have been wanting to do or still want to do. The only time is : ‘NOW.’ And it is as good as any other day.
A 28 year old boy, Ritchii Kara, with just 14 months of life promised to him, after being diagnosed with Variant Creutzfeldt-Jakob Disease, human equivalent of mad cow disease, says : “I think if you’re just going to sit about and be sad, what’s the point in going on anyway?”
With all the awful and horrible things this disease puts your through, he is wasting no time in fulfilling dreams on his “bucket list”, including a holiday to Hong Kong and a trip to for a gay pride festival in Hamburg, Germany, where Danish singer Whigfield, famous for her 90s hit Saturday Night, performed a song he had written. He even is raising awareness about CJD.
For being so benevolent and doing all of this, he is going to heaven.
I wish everyone affected with this incurable disease had a shot at the silver lining of life. I wish my uncle had it. I wish many others who have left the physical altar of life had that chance. My uncle had planned so much way ahead of time.. that once he retires from the Ministry, he’d travel the world. Alas, many times, life doesn’t work according to plans.
Oh, the unfinished life. Some times in life, we can surely take out time to read such stories and maybe sob a little and get inspired. These are heart warming and heart aching, at the same time. :’)
Meanwhile, there are other everyday heroes trying to spread awareness about this disease. Mr. Trevor Baierl created a CJD Documentary titled ‘One in a Million,’ which has faced rejection at the 52nd Ann Arbor Film Festival and American Documentary Film Festival. BUT it may also interest you to know that this documentary was also screened at the 2014 Laughlin International Film Festival where we it won the first ever Filmmaking for Humanity Award. In the times when movies and documentaries teach us a lot and facing rejections by these festivals only shows us that maybe, just maybe, no one wants to hear really about Prion Disease. Through consistent approach, Trevor seeks a worldwide distribution deal so that we can raise awareness and funding for research. Prion Disease research is leading the way to find treatments and hopefully a cure for not only Creutzfeldt-Jakob Disease, but also Alzheimer’s, Parkinson’s and ALS.
Where many people gained a few likes on Facebook by sharing their ‘Ice Bucket Challenge’ videos, do they care enough to at least open the damn links and videos from this blog post and share the word of Brain Killer diseases with the world?
Are you listening? Because we are watching? Do you care enough?
WATCH ON VIMEO : One in a Million : A CJD Documentary
I thank Trevor for all the love and hardwork he has been doing to help educate people in understanding this horrific disease.