Thursday, July 1, 2010

Conner and Cystic Fibrosis

I don't even know how to write this one so I guess I will just begin...

I want to introduce you to Conner and his Mom Sarah.

Conner lost his battle with Cystic Fibrosis a few days ago. 
He passed away on June 24th.

He was 7 years old. 

He also had a rare disease called Prune Belly Syndrome.
He is the only person to have ever been diagnosed with those two diseases together.

Here is a bit of info regarding Cystic Fibrosis from his Mom's blog:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

He had smaller than average lungs due to the Prune Belly Syndrome and also lacked any abdominal muscles.
You can see how this would complicate a disease like Cystic Fibrosis.
Sarah has a blog that she has used to document her struggle and determination to save her son and to help bring CF awareness to the forefront. 
You can go here to read her entire story and learn more about her and her amazing son.
It is powerful.
It is moving.
I could never do it justice or recapture it.

I wanted to share this story with you for two reasons.

They have suffered personally at the hand of Cystic Fibrosis.

Thousands more suffer every year at the hand of Cystic Fibrosis.

Here are some statistics from Sarah.
CF deaths average:
484 per year
40 per month
9 per week
1 per day

Their story brings to life the reality so many people are living with.
You can go here to learn even more about Cystic Fibrosis.

Here are a few ways you can help.

The funeral service for Conner was held yesterday, but a few people that are friends with Sarah have organized a 
"wear a red-shirt day" 
to show her and her family love and support.
So, today, wear a red shirt.
Take a picture of yourself in it and send it to me. 
I'm going to send them on to her friend that is organizing a large group of photos as a surprise. 
Thousands have already been invited to participate.

We hope she feels loved and buoyed up during this difficult time.

A fund was started by another CF mom to help cover the cost of the funeral expenses.
You can go here to donate.

If you would like to further help fight CF consider going here...
to donate towards
 "Great Strides" -- a fundraising walk for the Cystic Fibrosis Foundation to help find a cure.
This particular page was setup by Jessica -- a blogging friend of Sarah's, who also has a personal connection to CF.
Interested in personally participating in Great Strides?
Go here for all of the information.

Or go here to donate directly to the Cystic Fibrosis Foundation.

Sometimes we are able to sit in our own homes, in our own lives, living the day to day reality that is ours and we sometimes forget about the individual who is suffering. We forget about the personal pain -- the one.

But, for someone else,


it is personal.

We need only to find a cause, and then move our feet.


Anne said...

i am totally crying right now...that little boy is so sweet.

Steph said...

Oh, Britney, thanks for bringing our attention to such a heart-rending story. Conner's sweet spirit shines through in his photos. I hope his family is finding comfort right now.

And thanks so much for letting us know how we can help.

Stephanie said...

This was so touching. Thanks for the reminder to move our feet!

Sarah Flib said...

As part of the CF community myself, I have been aware of Conner´s story. It hits close to home and I am glad so many people are trying to help his family.