Throughout 2010 and into 2011 though I knew the outcome, I slowly read the blog, or online journal entries of Eva Markvoort, a vibrant young woman who valiantly battled Cystic Fibrosis. She named her blog, 65_Red Roses, after the childhood mispronunciation of her fated illness, the long-time partner she challenged. Reading it daily became routine for me during a time when my own health was particularly challenged. I have Crohn’s Disease. The onset of my symptoms began when I was 12 years old, and I was diagnosed at age 19. I’ve had several surgeries, and in 2011, I underwent a fairly straightforward but major surgery that resulted in an extended recovery. Crohn’s Disease can be well managed, but at times, it can render those with it the need to take the time to address symptoms, change medication, and like me, sometimes you need surgery.
I took my time reading Eva’s journal entries. I recalled many of the feelings she described. I didn’t want the end of her posts to come. I wanted her posts to continue on, to become books. To result in a storied life, but I knew where this was going, so I held onto her words, and enjoyed the energy I read in them for as long as I possibly could. It’s rare that those of us with chronic conditions can feel the type of joy that she had. Especially facing all she knew was coming her way, let alone all that she had gone through.
Eva’s flaming red hair gave proof on the outside that she had a fire within. However, Eva seemed to be one of the rare types of people who held a balance of that stoking fire along with the mystical splendor of obvious effervescence that lifted those around her. She wanted to experience life with full energy, and when she could, she would get out into the world and enjoy it. Eva’s strength was admirable. She longed to spend time with those she loved. She missed the outdoors. She was often tied to tubes and her hospital spaces, but she did what she could within those walls. She was spirited and could be found racing down the halls of the hospital on her IV poles, putting the wheels to a test!
Her words leaped through the screen and captivated me. Her favorite color, a bright lime green, represented when she wore large fairy wings while painting faces at festivals, seemed to me to be a sign that she tried to keep her own light vibrant, even when it might have seemed that darkness might have been closing in. This is a sure sign of those of us with silent diseases. We love color. All of the color. We tend to love makeup, hair dye, and fashion. Shoes. We take a lot of flack for the way we change our appearance, or how we might spend time on our appearance. Sometimes it is mistaken for vanity.
I decided that a small way I could do something for Eva would be to create Eva dolls. Eva’s family kindly accepted and assisted me with getting the first batch of dolls that I made to the facility where Eva was treated as a child. The Ava doll is intended to spread the vibrant energy that Ava shared throughout her life. Chronic illness is incredibly hard to manage, let alone during a time of youth. My goal has been to brighten a bit of the path for young CF warriors and share Eva’s story.
Photo Credit: 65redroses.com
Purchase the Film about Eva, 65 Red Roses Here: http://www.65redroses.com/
For more information on Eva’s story & her impact please see the following:
https://7squaremiles.wordpress.com/2010/03/22/a-world-of-hope/
https://www.cysticfibrosis.ca/
https://www.cff.org/intro-cf/about-cystic-fibrosis
https://en.wikipedia.org/wiki/65_Redroses
Gearup4CF Charity Bike Ride from Vancouver to Banff:
If you are inspired to make your own version of an Eva doll to provide for those with Cystic Fibrosis, I encourage you to do so! I modified the free pattern Sara designed. I added lime green fairy wings to customize the pattern, to make it uniquely “Eva”-like. The pattern is available in 8” and 10” template sizes, and can be found here:
