Wednesday, June 30, 2010

Dear Today Show

Facebook changed my life.

Now, before you go and think I’m some computer crazed lady who sits at home all day online, let me explain.

My son was born with the genetic disease Cystic Fibrosis (CF). There are many obstacles that come with this disease, but one of the hardest as a parent? The isolation. People with CF are not allowed to be in contact with one another because of potential bacteria/infections that can be passed between them. So unlike those with other debilitating diseases, they can never meet face to face with someone who…just gets it.

Yes, those of us raising children with CF can meet. We can mingle. But we can never get our families together. We can never share those memories.

Thank goodness for the internet. Thank goodness for Facebook.

Without the friendships…scratch that…family that I’ve gained through the internet I would be hopping aboard the train to crazy town.

Today, the life expectancy for those living with CF is 37, and that number is continuously getting higher. That gives us hope. Seeing the two sisters on America’s Got Talent sing their hearts out? That gives us inspiration. We, as parents, want to believe that our children will beat the odds, and will live long, happy, healthy lives.

But, in the real world…that’s not always the result.

Case in point. Conner Jones.

Conner Jones passed away from Cystic Fibrosis (and Prune Belly disease) on June 24th, 2010.

Conner was seven years old.

This is the reality of this disease. It is stealing our children. And we are joining together to say, enough is enough! We need to join forces and put our feet down. It’s 2010 and we have to make a difference, changes need to be made.

Without Facebook…without blogs…without the internet…we’d all be isolated from one another. We’d never able to share our stories. We’d be fighting this incurable disease alone. We wouldn’t be able to share advice, give tips, and support one another through times in need.

We wouldn’t even have a clue about who was out there…living in “our world.”

But the internet, specifically Facebook, has created a CF family. We’ve been able to connect. We’ve been able to share. To hope. To inspire.

To grieve.

When Conner’s parents were told that all efforts had been made, every option had been tried…and that it was time for hospice? We joined together. It may have been a virtual congregation…but there we were. Thousands of us. Holding up the Jones family in prayer.

Through her eloquently worded blog, she took us along for the ride on the twists and turns that come into play when you have to say goodbye to your child.

I sat at home, wondering. What can I do? What can I do to make a difference? I don’t have the funds to do anything extravagant. But I want to help.

So I messaged Conner’s mom Sarah and asked…”what is Conner’s favorite color?” Without hesitation she immediately wrote back, “Red. Conner’s favorite color is Red.”

And so began, “RED FOR CONNER.”

In all honesty, I thought a handful of friends would join in. I thought maybe 50 at the most. But as a few weeks went by, I realized that thousands of people were there alongside me. Thousands of people that wanted to do something, just something to make a difference….somehow.

Yes, getting a card of condolence in the mail is nice. But turning on your computer and receiving messages of THOUSANDS of people worldwide who are purposely donning the color red for this amazing, wise beyond his years, child? Turning on your television and seeing Chelsea Handler announce that she and her sidekick are wearing red for this child? Realizing that Regis and Kelly are both covered in red for this same child?


I’ve talked to Sarah maybe five times. And yet, I love her.

I love her family. I love my entire CF family. The thousands of them. The ones who get it. And the thousands of those out there who don’t live with CF every day, but take the time & energy to support it.

And the only reason I know that they are even out there?


We painted Facebook red.

And we’re not stopping until there’s a cure.


  1. Jen that is very well said. It brought tears to my eyes. You have such a wonderful thing for writing.

  2. It makes me so happy to know that there are so many wonderful advocates for the Jones family, for Conner, for this terrible disease...
    Thank you.

  3. I totally agree! It is so encouraging to meet more CF friends thru facebook and new blogs.

  4. Yes, very well said! I didn't think there was anything left that could surprise me, and yet, the togetherness, unity, amazing love among our CF community on Facebook has just astounded me. This is an amazing group of people.

  5. Perfectly said. I am 27 and up until 2 months ago, I knew no one like me. No one who struggled. Being in the hospital constantly is extremely hard, but the isolation this disease brings is even harder. No one "gets it", except those who live it. 2 months ago I went on Facebook and started meeting other people with CF, and it has changed my life. I am no longer alone. I have been in the hospital for the past 3 weeks and without the people I have met on Facebook, I would not have gotten through it. They are there every step of the way, cheering me on. They are there to share my laughter and tears. They do not judge, and though I wish not so many of us struggled, I am glad that I am not alone.