Monday, April 14, 2008

CF Story

Not a coincidence that This ran in the Virginian Pilot on the same day as Tricia's story. We were living in the Chesapeake area when all of the fundraising for this (now) 12 year old CF girl was happening.

Not everyone gets a second chance at life...

Consider Donating to the Cystic Fibrosis Foundation to help insure that other kids don't have the same fate as Emily.

Nate

22 comments:

THE LYONS FAMILY! said...

Oh wow. That's very sad.

Bre said...

That's sad. I will keep their family in my prayers. I also emailed you about a month ago to see if there was anything I could do about the Great Strides walk right now. You asked me if you could forward my email on to someone, and I've never heard anything about it. I am really interested in helping, and I am also planning on walking. I just need to know what I can do to help right now!

Brianne
VA (near Lynchburg)

Jenny said...

We live northwest of Boston, MA and our newspaper ran a section cover story on Sunday about a local girl with CF who's "Make a Wish" was to throw a really great prom for her school. http://www.eagletribune.com/archivesearch/local_story_104010005.html

It also contained a second article on CF in general - a primer of sorts.

I think your story and the attention it has drawn may be a murmur that is gaining volume and leading to a much larger understanding and hopefully greater attention to CF and the search for a cure. Even stories like this one, which is so sad, raise awareness. I'm proud of all the individuals and families who are letting their voices be heard.

Jenny said...
This comment has been removed by the author.
Merrie said...

Just add me to your long list of people that have signed up to be an organ donor (finally!) thanks to your blog. My brother-in-law passed away last Nov after an accident, and we were all inspired that his liver, both his kidneys AND his lungs went to four people. It was a blessing and a huge comfort for all of us who loved him to know that he had touched four lives so deeply. Remember that.
God bless you and your entire beautiful family!

JoythruHisGrace said...

Heartbreaking. Will be praying for this family and for all others like them in similar situations.

Kupiec Baby Blog said...

Such a sad story. I pray that the
Lord is using your situation to make otherws aware of the plights for those with CF. Maybe someday stories such as Emily's will be a thing of the past.

mmc said...

I've had numerous conversations with my friends and family urging them to sign up to be organ donors and to donate financially. I'm spreading your message across my NYC college campus as best I can!

Princess Talana said...

Nothing makes me more mad at this disease than when somebody so young dies from it.

Tracy said...

That's so sad to hear ...
That is what scares me so bad about my child having CF anddddd what really bothers me is people, even some family members make comments like she's so healthy, etc. But they don't understand how lung infections are, you never know when they're gonna get one or how bad it will be.
We go to Birmingham tomorrow for Molly's checkup with her CF doc (we go monthly), I am sorta expecting them to admit her, she seems ok and is still eating well but has a little cough and it sounds cruddy.

Tracy

danabrown said...

Oh, my heart breaks. I remember Emily, she came by WAVY when I worked there. So sad.

Patty said...

That is so sad. I will keep her and her family in my thoughts and prayers.

Lesley said...

Awww, how sad. I will pray for that family too.

lbstr-quadrille said...

I was living in Chesapeake when that story first ran too and remember so many emotions for that whole situation. I also lost a classmate in 9th grade to CF. God does work in mysterious ways, the timing of it all, wow. I keep the Pilot as my home page and actually saw the link to your story after reading this one. Hopefully her story will bring more awareness to the disease and organ donation, just as you're doing Nate, and so well.

Angela R. said...

It's unfortunate that not every story can have a happy ending. Just last week here in NY, another 14 year old girl from my CF clinic lost her life battling CF.

As a CFer myself it is horrible to hear these stories. But this why it is so critical to help and spread awareness about CF. Nate, I want to thank you very much because you have done such a great job doing so, by sharing this blog and your story.

Praying for all those and their families who battle CF!!

-Angela

Steph said...

My heart goes out to this family. I hope more people consider organ donation.
Steph/Stl Mo

My2Girls said...

Just saw Emily's story featured on the 11 o'clock news.

~Amy
Va Beach, VA

Thoughts and Things said...

That brings tears to my eyes... All the things she will miss out on.

Thank you again to the family who made sure Tricia's husband gets to keep his wife longer and Gwyneth's mommy gets to know her daughter. Thank you for a truly selfless act.

And thank you to Nathan and Tricia for spreading the word.

kgirl said...

You're right....not everyone gets a second chance at life or that "miracle" we ALL so want....that's why some people struggle so very hard to have that little "mustard seed" of faith. They look around seeing others getting that miracle and wonder why not them. My heart really goes out to this family!

PWSMommy said...

I was sent to your blog and read it with much interest, I lost a good friend to CF a number of years ago. I'm certainly praying for you and your wife and daughter, that you can have many good years together.

Glenda
NB, Canada

rmjlrd03 said...

Hello Nate,im from the UK and i have 2 brothers with CF,unfortunatly lost one last year,he was 24 and a true fighter but CF eventually won him ad he lost his life.My younger brother is 20 and fighting fit.Me and my family have already been through and sen the hardest part of having a CF loved one and we still face that all again,its so hard.

Im so glas Tricia is doing well and wish you both all the best for the future,and of course to your little girl also,what a blessing she is.

Laura (United Kingdom) CF Sister

jerilynn said...

Your story is the ripple that can start the wave of interest about CF. I recall watching "Alex: Life of a Child" a memoir (made for TV movie) back when I was in Jr High and calling to donate to CF because I was so moved. It is the story of Frank Deford's daughter. He was Sports Illustrated's editor and now consults with ESPN. You have already made so many more people aware of organ donation and CF. What a phenominal legacy.