Monday, August 16, 2010

CF Telethon

A childhood friend of mine now works for a NC television station that holds an annual telethon for Cystic Fibrosis every summer (read more about that Here). Pat met up with us a few weeks ago to film a short clip that was shown during the telethon (see below). I thought you might like to watch it...you might also like to know that the telethon raised nearly half a million dollars for CF research!!!



On a related note, a young CF girl named Jaimee passed away yesterday just a few days after receiving her long-awaited double lung transplant. Jaimee is the cousin of a dear friend of mine...she leaves behind a husband and an awesome extended family who could really use your prayer today.

With another death in the CF community, I'm reminded more than ever that there is still no cure, but that we are getting closer every day to finding that cure and making a HUGE difference in the lives of thousands of CFers around the world.

Thanks.

Nate

34 comments:

Anonymous said...

This news makes me sad I did not know her but...... was praying for her. Now praying for her family.
Trish's story makes me so hopeful for our friend Rachel Hope Vanlandingham. A awesome 12 year old tha we love dearly.
Tracy Edwards/Chesapeake, VA

Laurie in Ca. said...

This video is beautiful and gives me goose bumps remembering those days through reading here. I am so sad to read about Jaimee, not the answer I was hoping for. I will pray for her husband and all who love her. Love you guys.

Love and Hugs, Laurie

Sewconsult said...

Beautifully done. Such a testimony to God's hand and the dedication of your love.

Michelle Jamie said...

This was great to watch and listening to the details being relayed reminded me of the journey so far.

Really sorry to hear about Jaimee's passing.

April said...

Oh my goodness.....my tears are plenty right now. Praying for Jamiee (sp) family hard. The video of you and Trish is great! Nate, I'm so terrified. Seems like I'm in and out of the hospital constantly. Missing my 2 yr old and being at home and being active. Props to you guys for being so strong and positive. Love to ya'll.

sarah said...

nate, not a day goes by that you three aren't on my mind. i continue to thank and praise God for the miracles that are tricia and gwyneth and continue to mourn the passing of beautiful eva and others like her. i have been praying for jaimee and am sorry to hear this sad news.

one of my friends is a CF researcher at johns hopkins. please join me in prayer for that team of folks - that they would make even greater progress so that no one else has to succumb to this disease.

God bless you guys.

sarah

Penny said...

Tricia's story never fails to get me choked up and teary eyed. God bless you both for sharing it over and over.
I am so sorry about your friend Jaimee's death. I pray God's comfort over her family.

BuckeyeNP said...

very cool. Loved the video. Hard to believe you can sum all of it up in 5 minutes, but...way cool. :)

laura anne said...

so sorry to hear about Jaimee.

The more I hear about folks like Eva, Jess Wales, your friend Emily, the more I think Tricia's journey is full of miracles. Likewise with Natalia Ritchie too.

Praying for the day when CF stands for 'Cure Found' to come quickly.

erin. said...

So beautiful!! Tricia & Gwyneth you two are such miracles!! Loved the video! So sorry to hear about beautiful Jaimee. Will continue to pray for all of you.

JUST A MOM said...

I LOVE IT BEAUTIFULY DONE!!!!!!

Anonymous said...

We visited Nags Head Church yesterday... it was my first time seeing your dear Gwyneth!! I will continue prayers for your family and for Jamie's family.

Brad & Karen said...

Wow, uber cool to hear you both! What a well done presentation.

So sorry to hear of the loss of your friend, Jaimee, so hard to comprehend.

Still sending prayer to Heaven on behalf of you three.

Karen,
West Coast
Canada

Anonymous said...

Mrs L,
i am SSSSSSSSSSOOOOOOOOOOOOOO thankful that God saw fit to save both of your lives!!!!!!!!!!!!
I love ya'll and my prayers are with you!
Lov you,
Amy Anderson
Now in MO:)

KYnurse said...

I absolutely love it-so much I posted it on my facebook page. God is good and people need to know that. What a picture of strength and faith you show. Thank you for keeping all of us posted on your lives.

Mildred said...

Enjoyed your video so much, hearing about it is better than reading about it!
I've posted a link on my facebook page also.
Wishing you God's blessings,
Mother of a CF son

karen towns said...

Gosh. I have followed your story since Tricia was in the hospital waiting to deliver G. I know this story...but hearing it all again from start to finish in her sweet words...it really touched my heart. She is so full of the love of Jesus, and well, I'm sure you know- ha! She is a very special person. I think your family is just so dang cool! Have a great week!

CFHusband said...

@Catherine & EandK

While I appreciate your concern, in the future, please, don't bring the venom and garbage from that blog here to my blog. I know of the blog you are referring to, and I want to have absolutely nothing to do with it. If people there want to bring me into their conversation, that is there business...more than likely, anything that is said there by anyone is just as full of lies and twisted truth as the rest of the conversation on that blog. I won't address or defend anything that is said about me there.

Thanks!

EandK said...

Didn't mean to offend at all. Wasn't trying to do venom but had a reaction to someone spewing her. Hopefully, you realized that through my post.

I enjoy reading your blog. As a parent of a child with special needs, I can certainly understand your journey and all of the joys you experience because of your work and faith.

Anonymous said...

the video sends an amazing message and you two speak so well in it...thanks for sharing. jcn

Smashley said...

Please pray for Kerry Hutchins. She was waiting for a lung transplant, and has been stuck in the hospital for months. She was recently taken off the list because she is too sick to survive a transplant, much like Eva was in the days before her death. Kerry is now on comfort care, but we're praying for a miracle.

http://www.mlive.com/news/grand-rapids/index.ssf/2010/08/lung_transplant_patient_organ.html

Thanks,
Ashley

purejoy said...

great video. it's been an incredible journey, and i'm thankful for having been invited along. thank you so much for sharing your lives with us, nate. wishing the best for you and your girls.
would love an update on how gwyneth is progressing.

i have a friend who just brought her daughter home after 20 weeks in the NICU. she was one of three, the only survivor, born at 25 weeks…1lb 9oz.
http://vaughanswalkingbyfaith.blogspot.com

you really do have two amazing stories.
and your transparency i have no doubt has been an encouragement to so many.

PinkCupcake said...

Please pray for little Daisy Love. Her daddy is a pastor in California

PrayForDaisy.com

THE OLD GEEZER said...

I added myself to follow your blog. You are more than welcome to visit mine and become a follower if you want to.

God Bless You ~Ron

~j~ said...

I loved watching this video and being reminded again of the faithfulness of God and the power of prayer! You two are awesome!
blessings,
julia

Skye said...

it's so beautiful to see your family together and tricia so healthy. thank you for sharing.

Kathryn said...

Hope you guys are ready for the Labor Day Breeze, as it were. Our prayers are with you.

marcia said...

Great video! Good to hear Tricia's voice so strong and clear. Don't hear it often, of course, but remember it was rather weak for awhile post-transplant. Just lost a local West Michigan mom, early 30's, to CF about a week ago. She had been waiting for transplant at U of M hospitals for several months, but taken off the list just a few days before she died when it was determined she had become too weak. So sad! Apparently MI is very low on the number of people on donor registry, and she and her family took their sad situation and turned it into a plea for people to register. Michigan readers..register NOW!

marcia said...

Great video! Good to hear Tricia's voice so strong and clear. Don't hear it often, of course, but remember it was rather weak for awhile post-transplant. Just lost a local West Michigan mom, early 30's, to CF about a week ago. She had been waiting for transplant at U of M hospitals for several months, but taken off the list just a few days before she died when it was determined she had become too weak. So sad! Apparently MI is very low on the number of people on donor registry, and she and her family took their sad situation and turned it into a plea for people to register. Michigan readers..register NOW!

Caroline said...

It was so lovely to see and hear you guys! amazing to hear once again of God's goodness to Tricia and Gwyneth and Nate! And, on a side note, Tricia's hair has got so much longer! She looks fab! :-) x Although, she looked fab at every stage of her journey! :-p

Conya said...

Your family is such an awesome testimony! Anyone who watches this video should become an organ donor.

CFer said...

This is so touching!!! It's hard to think that there's a possibility that I will be where you guys were one day. I try to just leave it in God's hands and trust Him with it, but I'm reminded occasionally of it and it's just so awesome to see you're story and how God brought you through all of it!! Praise Jesus!!!!

bbmomof2boys said...

Sorry to hear about Jaimee. Our friends son also died earlier this year after enjoying a year with his new lungs. He did make some bad decisions but he did ENJOY HIS YEAR OF FREEDOM! He would have been 29...

Hugs,
Carla

Tracy Wilkinson said...

I love this! I have followed your story since Gwyneth was born. It is so crazy to see you both just calmly tell the short version of your story, after watching the whole thing play out. It is so amazing that Tricia is sitting there, nice and healthy, able to be an awesome mommy to Gwyneth! :) I love it!