eva and 65 roses

originally posted apr 29, 2010, updated sep 9, 2012

65 red roses photo

we blog therefore we are. a blog is the modern version of emily dickinson’s letter to the world. to some of us, it has become a medium for expressing the other part of us. it’s the private one that we keep away from family and friends for fear of being misunderstood. through our blog, we write our thoughts like a prisoner tapping the wall hoping that there’s someone else on the other side. oftentimes, our words are met with silence. but sometimes, we find a connection. somebody reads our post, then another, and another, until the chain grows and achieves a life of its own.

eva dien brine marvoort (1984-2010) was in the advance stage of cystic fibrosis when she started her blog in 2006. she named it 65 red roses after ’65 roses’ which is how children who have the disease are taught to say it because the words are much easier for them to pronounce.

she used her blog as a platform for spreading awareness for cystic fibrosis. it’s an incurable and hereditary disease that causes the exocrine glands to operate abnormally by plugging the body’s ducts and passageways with thick mucus. in many instances, this leads to serious breathing and digestive problems.

in 2007 she underwent a double-lung transplant. two years after having the procedure, however, her body started to reject the new lungs. she died on march 27, 2010 while waiting for a new set of lungs. had she lived a few days more, she would have been 26 years old.

she didn’t mince words in documenting how it was like to deal with the disease on a daily basis. she told it like it was. the high and the low. the emotional up and down. the momentary thrill of victory and the shattering agony of defeat. in the process, she had made a difference in the lives of thousands of her readers. she had become a voice to fellow cystic fibrosis sufferers all over the world. to the rest, she had shown how to live for the moment and how to appreciate the little things that we oftentimes take for granted.

a documentary showcasing her life’s story and the friendships that she made on the internet has been released on dvd with good reviews. it was directed by philip lyall and nimisha mukerji and produced by force four entertainment, in association with dualogue productions and cbc newsworld. it officially became available in the u.s. on jun 19, 2012.

“this is my letter to the world, that never wrote to me,” emily dickinson once rued. in eva’s case, the world wrote back a thousand fold.