Tuesday, November 25, 2008

Heartbroken

This is today's post. There will be no pictures, no decorating and no cooking. I have been a nonprofit professional for most of my career, and I love it. I believe that God put us on this earth to use our strengths and talents to help people. My strengths are in public relations, marketing and fund raising, and I use them for the Cystic Fibrosis Foundation.

Cystic fibrosis is a life threatening, genetic disease that affects the respiratory system, as well as the digestive system. The CF Foundation has made tremendous progress with wonderful drugs and treatments to help kids and young adults live longer, healthier lives. Parents who had babies with CF in the early 80's were told their babies might not make it to college. Now many of those same kids are in the early 20's and doing pretty well.

Unfortunately, there are still too many kids and young adults, who succumb to CF, and I hate it. One of our CF patients, a 15-year-old girl, passed away yesterday. To make things even worse, her older sister also has CF, and she's currently in the hospital with an infection and fever. I am beyond heartbroken about this today.

I won't use my blog to solicit for the CF Foundation, other than to say if you ever need a cause to contribute to or volunteer for, you can't go wrong with the CF Foundation.

Tomorrow's post will be about my Thanksgiving tablescape and menu. But for today, I'm going to hug my kids a little tighter and be thankful for my blessings.

21 comments:

Nola @ the Alamo said...

I had a coworker years ago who had 3 children; 2 of them had CF. They both died in their early teens. It was so tragic to watch their young bodies waste away. It all but tore the family apart. The very saddest thing was that the remaining child, the middle child who was a teen when he lost his siblings, swore he would never have children because they would have the gene, also. This family was robbed of their children and any potential grandchildren by CF. Thank you for telling about your experience; we should all be thankful when our loved ones have their health; that is all that really matters!

Lisa said...

I'm so sorry Sandra. I remember you telling me about this family. My heart goes out to them.

Ivy Lane said...

In my prayers....

sandra/tx said...

Lisa, this is a different family. The other family's girls are still struggling, too. So sad.

It takes two people who carry the gene to produce a child with CF. Even then, there's just a one in four chance that they'd have a child with CF. That's why it's really heartbreaking that some couples may have just two kids, both of whom have CF. So much for statistics, huh? :-(

sandra/tx said...

Nola, that's a very sad story. :-(

Velvet and Linen said...

I too will be hugging my children and telling them how much I love them a few more times today than usual.
Thank you for reminding me to keep perspective, and thank you for the wonderful work you do for families dealing with this terrible disease.

xo
Brooke

Sit A Spell said...

So sorry to hear this, but thankful God has put you where you are to help and be there. More people need to reach out to others.

Bless...shell

The Pampered World said...

I'm sorry to hear this...They will be in my prayers.

Jerri Lynn @ Southern Sassyness said...

Yes, if there is anything I am thankful for, it is that my children are healthy and whole. I cannot imagine what this family is going through....thank you for touching these lives in ways that I never could. Praying for them today!

Amber said...

Oh Sandra, I am so sorry. I look forward to the day when lung diseases are completely curable. No family should have to bury their child.

Thanks for the reminder to count my blessings. And thank you for all the work you do to make the world a better place.

Primitiques 'n Poetry said...

Prayers sent for the family and for you. ~Mindy

Linda at Lime in the Coconut! said...

First...thank you. For your advocacy, your passion, your hope and your belief.

There is no sadder death, than to be robbed...breath by breath at such an early age. To ravage families, worse yet.

One day...we WILL know more, have more answers to the questions.More knowledge, less suffering.

Keep fighting the fight.They need you. We need you.

Thank you, and I am hugging them all tonight. Extra hard.

mary said...

I am so thankful that you are part of the CF fight to save the lives of children. What a tragic disease. Give your sweeties an extra hug for me too.

Cote de Texas said...

How sad for the family. It's such a horrible disease - the kids are so little and they just hang on despite the pain. You sound like a guardian angel - they are lucky to have you helping them.

Joni

PAT said...

I'm so sorry to hear about this Sandra.

You are a blessing to so many.

Katie @ makingthishome.com said...

Sandra,
Thank you for sharing this story. I haven't known anyone with CF, so I really appreciate your first-person description. There are so many things for us to embrace in life, during our good times and bad. Thank you for reminding me and urging me.
Katie

dec0r8or said...

I'm so sorry, Sandra. That poor family! Thank you for doing all you do to get the word out and helping to make a difference. (((Sandra)))

Pennie @ Ladies Blend Thymes said...

So heartbreaking Sandra-bless the girls and your kind heart. I'm thinking of all of you. Pennie

Julia @ Hooked on Houses said...

That IS heartbreaking. I can't imagine what that family is going through. They'll be in my thoughts and prayers today.

I think it's wonderful that you put your time, energy, and heart into such a good cause, Sandra!

Things That Inspire said...
This comment has been removed by the author.
Things That Inspire said...

I once read a book called "Alex: the Life of a Child (Frank DeFord) about the short but beautiful life of a child with CF. My heart goes out to the families and children who are struggling with this disease.