Friday, July 2, 2010

For Conner

Dear Today Show,

By now, I'm sure you've heard the heartbreaking story of the Jones family who recently lost their son, Conner, to Cystic Fibrosis. (

Several days after the passing of little Conner Jones, I'm still struggling to pick up the pieces of my broken heart. I never knew Conner. I've never met his mom, Sarah. In fact, I can almost certainly tell you that I'll NEVER meet her. But I can also tell you that I love her. I'll say it again: I truly love Sarah and Conner Jones.

And I love the single mother who has dedicated every day of her life to making sure her daughter with CF is as happy and healthy as possible. I love the newlyweds who have made it their mission to spread awareness about this disease. I love the 28 year old who just recieved new, mucus free lungs. I love the mother who teaches her CF sons how to be healthy and love Jesus. I love the little CF boy who plays baseball better than I could ever hope to. I love all the parents who are a voice, an advocate, for their children. I love all the moms and dads who somehow balance the consuming task of maintaining their own health issues and taking care of their children's needs. I love the parents trying to come to terms with the diagnosis of their newborn. I love the woman struggling with infertility due to CF.

I love all these people and I'VE NEVER MET A SINGLE ONE OF THEM.

You see, my two older sisters and I were born with CF as well, and because people with CF are encouraged not to mingle with each other due to the risk of spreading potentially fatal bacteria back and forth, the only way I will ever know these wonderful people is through the internet; through blogs and forums and social networking sites like Facebook.

But these people are more than online friends, they have become my family. Through the internet, we share stories and pictures; we swap advice and health tips; we laugh and cry together; we hold (virtual) hands through trials and we celebrate triumphs; we pray with and for one another; we love each other and sometimes...tragically, we lose each other. So it is with Conner Jones.

Conner was seven... SEVEN! That is the horror and the truth of this disease. It is slowly, painfully and relentlessly stealing the lives of people--children--every single day!

I was there, reading about and praying for this sweet boy, along with literally thousands of other people across the globe. Because his courageous mother was willing to share all the bitter, difficult, painful details, Conner was able to touch the lives of countless people. I, for one, will forever be influenced by him.

There are several schools of thought among the CF community, and we all stand on a different rung on the positivity ladder, ranging from Sarah's "Not So Bright And Shiny" to another CF'ers "I Have CF, So What?". I suppose I fall somewhere in between. I honestly don't know that a cure will be found in my lifetime, but I do believe it's a cause worth fighting for. Not just for myself, but for all the children fighting this disease, dealing with the physical and emotional pain this illness invariably causes; for the children, like my own daughter and my niece, who will spend a significant portion of their lives without a mother at home because "mommy's in the hospital again"; for the husbands and wives of CF'ers everywhere; for their mothers and fathers, grandparents, aunts and uncles, and their brothers and sisters; for my own mother who cradled her daughter in her arms as she took her very last breath at the age of 14; and for mothers like Sarah who struggle to find an answer as their dying child asks, through anguished tears, "Why?".

We aren't asking for pity, we are asking--PLEADING--for help! Because as grateful as we are for this online community, it's a crying shame that any of us have to be a part of it in the first place. Red was Conner's favorite color and in the days since his death, the CF world has been painted red in a display of support for the Jones family.

As I sit here typing this in my red T-shirt, I ask you to join our cause. By spreading CF awareness and showing support for sweet little Conner, you will be helping each and every person out there whose life has ever been affected by this terrible disease.

Let's come together and give all the Conner Jones' out there a fighting chance!

From one CF crusader,
Jenny Livingston


Anyone who has been touched by Conner's story is being encouraged to write a letter to the Today Show, if you feel so inclined.


  1. So Beautifully put.... You had me crying... You said all of that perfectly....

  2. Jenny that was absolutely perfect!!!! Post this to facebook, so I can post it on my page too!!!
    Can you feel the changes coming about in our world??? That little boy has struck the match and a fire is being lit for our cause!!!! You are so right about family. I follow so blogs and have many friends on facebook that I have never met and will most likely never meet, but I love each one of them and love following their lives.

  3. Oh Jenny, I feel the same way as the other 2 post. This little boy has changed the world. Like you said it was because his mother chose to share her heart and soul, no matter how hard it was. And your letter had me crying also. Love to all,,,, karla

  4. Way to go, Jenny. I didn't wear red down here in Nicaragua, but I guess I should have. Have you read any one else's letters to the Today Show? If you have any links to others, I would love to read them.

  5. There were a couple comments that I accidentally deleted instead of published. If yours happens to be one of them- thank you, they were very nice, and I'm sorry I can't share them here. Next time I'll be more careful about which button I'm clicking...

  6. What a beautiful letter Jenny. I am so glad you found my blog and left a comment! You have no idea how often I think of Shannon, I've even mentioned her in a post of mine. She was the first friend I ever had (besides Lexi of course!) who had C.F. and the first friend I lost to C.F. I have a picture of us dressed up at Camp together. I remember specific things said at her funeral. I have wondered over the years how you guys were doing and wished I could connect with you and now we have!

    Please stay in touch and if it's okay, I will check back often! Much love to you and your family. Please tell your mother hello for me. Love, Sharlie


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