Have you been praying for Pepe?

"Pepe" - her name is Gina, received a double lung transplant (she has CF) over a month ago when she was very sick and had two strikes against her. The time since the surgery has been very difficult with multiple complications and surgeries. Somehow she has continued to fight.

But the latest post on her site indicates her condition must be very grave tonight. Please lift her up to the Father. And don't forget her family and friends who have gone through this very difficult ordeal with her.

Help Find the Cure for CF

I'll be there waiting tables!

Haley Palmer's Wish

Even though Haley died last week, her wish to promote Cystic Fibrosis awareness lives on. Here's a news video about her from KTUL in Tulsa.

Her mom also has posted a great follow up to yesterday's celebration.

Color me pink (on Thursday)

Normally you wouldn't catch me saying that or anything like it. But today is different.

Earlier I posted about Haley Palmer's death at age 12 from complications related to Cystic Fibrosis. Her story was one of courage and faith, and her life touched so many.

Her parents have asked that those attending her memorial celebration Thursday morning in Oklahoma to wear Haley's favorite color. What little girl doesn't love pink? I can't be there, and probably neither can you. But I can join in by wearing pink.

It's the least I can do.

So you'll find me today wearing the pink shirt picked out and given to me by my wife and daughter. They say it looks good on me. It last saw the light of day on Mothers Day. I prefer any other color. But today it's not about me.

Breathe deeply, Haley

Haley Palmer lost her battle to stay alive today.

How I hurt for her parents, family and friends.

Thanks for your prayers on their behalf.

Cystic Fibrosis, while a horrible disease, somehow works to fashion the most incredible people we'll ever meet.

Dance for joy Haley. I want you to teach me how one day.

So what's got you down?

Life doesn’t come with any guarantees about how long we’ll have it, or the quality of it. But hopefully, with the time we are given by God we can make the most of them. Earlier this week, while visiting with my daughter-in-law and granddaughter and son at Duke Hospital I was able to visit with a young lady named Christy. She’s in her mid 30’s and is in the hospital because she got the flu. Now, most people her age would deal with it and recover. But Christy’s not most people.

At age 4 she was diagnosed with cystic fibrosis, which is a terminal disease. Just a few years ago she received a lung transplant that extended her life for a few more years. And now she’s looking at having to undergo additional surgery this year and a kidney transplant next year. So she’s known since she was a girl that without a cure for her disease – and there still is no cure – she wouldn’t live to much past middle age if she made it that far. For most of her life she’s been hooked up to oxygen and has had to take medications, lots of them. She’s spent Christmas and now an Easter in the hospital.

As I talked with her yesterday afternoon I was reminded that not only is life insecure, but it can be really unfair. Here’s a vibrant, attractive young woman, in what should be the prime of her life, dealing with a disease that could render her hopeless and angry. But that wasn’t the case. I could certainly use a dose of her upbeat attitude and positive outlook on life. And she'll be quick to tell you the source of her joy is her relationship with Jesus Christ.

I’m at the point in life, I’m 52, when I spend more time thinking about the rest of my life, and how I hope to live it. And one thing I’ve found is that the older I get, the faster the years go by. And as I listened to Christy talk about her life, the life she has been given, I realized that what counts is not how long we get, but what we do with the time we have.

And whenever that day comes that life here ends, whether it’s somewhat expected or a true surprise, it’s what we did before that moment that really matters.

If you want to know more about either Cystic Fibrosis or Organ Transplants, please follow the links to the left. And you can meet Christy via her blog. She'll pick you up!

News story on ABC 11 in Raleigh

Here's the link to the video of the news story that ran last night in Raleigh.
They did a great job. Thanks to Barbara Gibbs and WTVD for getting the word out.

Great Strides Walk Outer Banks

Today some of the members of last year's Great Strides Walk team here on the Outer Banks of NC met for a debriefing and to start the ball rolling for this year's walk.

Last year was our very first OBX effort and $30K was raised for research to find a cure for Cystic Fibrosis. This year's walk will be on Saturday, September 13 at the Dare Co. Rec Park in KDH.

If you're in NE North Carolina and want to know more, or even better, join the organizing team, you can call me at Nags Head Church. If you're elsewhere in the world, go to Nathan's blog. He has posted today about organizing or joining a Great Strides Walk in your area.

For the locals, our first meeting today was at Basnight's. On ribs day. 'Nuff said.

[in the pic clockwise from top right: Gail, Andy, Barbara, George, Brenda]

Misdiagnosis!

Thank God for doctors. The work and good they do can't be over-appreciated. And thankfully, most of the time they get it right when making diagnoses. (Ever watch "House"?)

This morning I met a beautiful young woman who at age 32 found out she has cystic fibrosis - a genetic and fatal disease. She's had it her whole life. She's had the symptoms her whole life - coughing, struggle breathing, eating like a linebacker but never gaining weight. And her whole life she was misdiagnosed.

Now, after finding out just two years ago that she has this disease, she's begun the process at Duke University Hospital to be placed on the list for a double lung transplant. It's not a cure, but it's the only option left for her to sustain life.

Can you imagine always knowing "something's wrong" and it's more than a cold or bronchitis. None of the meds, whether over the counter or prescription do any good. And the people you count on to tell you what's wrong can't figure it out. Can you imagine?

We live in a culture/society where "misdiagnosis" is now more common than the plain truth. Now, every behavioral problem is either the result of some "disorder" or "disease", even though the problems are the result of choices, not a bacteria or mutated gene. We live in a day when it's more acceptable to put the blame on someone else than accept responsibility for our own lives. We've taught ourselves to look for someone to say to us, "It's not your fault. You can't help it".

But your whole life, even though you've been fed the lines, deep within you know the diagnoses have been off the mark. Won't someone just tell the truth?

Yet, when someone does speak the truth it's a difficult pill to swallow, but it can be life changing.

More to come.

We took a walk

The Great Strides Walk today surpassed our expectations in every way! Great turn out, despite the fact that the weather early on wasn't inviting. But God cleared that all up just in time for the actual walk.

Lots of great food thanks to local restaurants and grocers. A super raffle and silent auction. I walked away with a very cool framed beach print among other things. My wallet is lighter, but I'm happy about it.

All the volunteers, especially Nathan, who spearheaded the event did wonderful work to bring it all together. The goal for our fist ever CF walk originally was $15K. CFF raised that to $20K a few weeks ago because we had met the goal. When it's all said and done more than $30K will have been donated to fund research to find a cure for this terrible disease.

Next year will be bigger and better!

Close to home

For my whole life I've watched Jerry Lewis do his Labor Day thing. One year as a kid we had a
"Carnival for MD" at our house. I admire the firemen who stand in the street asking us to fill their boots with money for MS. St. Jude's Hospital does marvelous things for pediatric cancer patients and research. There are lots of great causes out there to support. But you tend to grow numb to their appeals.

Until it gets too close to home.

Tomorrow I'm participating in the first ever NE North Carolina Great Strides Walk. It's 9 to 1 at Rec Park in Kill Devil Hills, and we're raising funds to support research to find a cure for Cystic Fibrosis. My son's wife, Tricia has CF.

I hope to see you there.
Bring money. If you can't bring it, send it. It's about saving lives.