Mondays are good for Recycling! This was originally posted on 9.11.07. There were no comments under this post, which I find amusing, now.
This video reminds me so much of Tricia when she was little, even though I didn't know her then.
Tricia was also a patient at CHOP when she was that age...
Nate
I remember watching that when you first posted it. Hopefully by bringing it back up it will help a lot of people get a better grasp not only of what it's like to live with CF, but of Tricia's life, too.
ReplyDeleteBrings back so many memories from when we were kids and in soccer together :) Very interesting. Thanks for posting!
ReplyDeleteBecky
This was great, I learned so much from this. Thanks, I never knew about the digestion issues.
ReplyDeleteThanks for the information I would have never learned of otherwise. Also,I believe God is answering your prayer about using your story to raise awareness. I have now decided for sure to donate my organs upon death. I would now consider myself selfish not to. Thank you.
ReplyDeleteI'm looking forward to learning more about CF this week. My Husband, children and I are Organ donars since we connected to your blog a few weeks ago. its 1:18am in S.A. right now I've done a list for you guys and will post it tomorrow.
ReplyDeleteYou are doing an excellent job raising awareness of Cystic Fibrosis. I knew nothing about the disease, save one program I heard on Dr. Dobson's radio show years ago about a really cute girl who seemed so brave, and very wheezy.
ReplyDeleteFollowing you guys, and praying for you has helped me empathize and care, actually. You are an effective communicator, and just an all around nice guy!
Great video! Thanks for reposting it - I wasn't addicted to your blog back in September and missed it the first time around!
ReplyDeleteI missed that the first time around - hadn't found you yet !! So very informative, thanks for reposting -
ReplyDeleteWhat a great way to help us all understand the disease a bit better. Thanks for reposting it!
ReplyDeleteThat's awesome, "She reminds me of Pippi Longstocking" How true, that girl has such spunk to her and so much laughter in her eyes, much like Tricia! I'll be praying for lungs everywhere tonight, sick ones, healthy ones, healthy ones that will extend the lives of sick ones.
ReplyDeleteThanks for enlightening all of us on what a horrible condition CF actually is! Tricia is obviously a real trooper and God Bless her for having to go through all that she has been through and God bless you and her family for helping her through it!
ReplyDeleteWow - thank you so much for posting this. It really helped to understand what people with CF go through on a daily basis.
ReplyDeleteThanks for bumping this. I wasn't on your blog back then. I had NO idea the extent of the treatments/medications that a child has to take and this totally put it into perspective.
ReplyDeleteThanks again!
Michelle in MO
Such a wonderful video. I know you continue to create awareness of CF, which is so needed. Devon was inspiring and so full of spirit. Living outside of Philly, it is so reassuring to know CHOP is here shall we ever need.
ReplyDeleteGreat information! I know very little about CF. Thanks for broadening my horizons. AND THANKS TO ALL THE POSTERS WHO HAVE STATED THEIR INTENT/SUPPORT FOR ORGAN DONATION! (FROM A RECIPIENT :)
ReplyDeletePraying for you.
thank you for posting that. it answers a lot of questions.
ReplyDeleteI have been praying for your two sweet girls since I "happened" across your story a short time ago. I keep thinking about a song that our worship pastor wrote about our son who was born with autism. I wanted to share it with you because it applies to both Tricia's and Gwyneth's life.
ReplyDeleteWonderfully Made (by JD Cunningham)
I see in his eyes proof that he’s mine
And his smile is the same one she’s given me so many times
And each time he laughs I can’t help but cry
Cause the world’s bound to hurt him no matter how hard I try
And I try to remember though I still can’t conceive
That he belongs to you more than he ever will me
For you created his inmost being
Knit together in his mother's womb
And his frame was never hidden from you in a secret place
From the depths of the earth you saw his body form
And ordained every step of his days
So I praise you for he is fearfully and wonderfully made
And I know full well your works are wonderful
I may never know and surely won’t understand
The path that you chose to take this boy down to become a man
But please make him faithful and God make him brave
And grant me the wisdom to point him back to your ways
And all through the years as his little heart grows
Lord pierce it with love so that some day he’ll know
That you created his inmost being
Knit together in his mother's womb
And his frame was never hidden from you in a secret place
From the depths of the earth you saw his body form
And ordained every step of his days
And he’ll praise you for he is fearfully and wonderfully made
And he’ll know full well your works are wonderful
Lord I praise you for he is fearfully and wonderfully made
And I know full well your works are wonderful
Psalm 139:
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, 16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
Thank you so much for bumping that video Nate. My nephew is 9 months old and was diagnosed with CF at 2 weeks. I know my sister is well aware of what the future holds for them as they care for Lil Chris but this really helped me understand so much better! I pray for them every day & for you & your precious girls! Thank you for all you are doing to raise awareness of CF! We're doing a Great Strides walk on the Ocean City (NJ) boardwalk this May. I'm sure Tricia has some good memories of that place. =) God Bless! DS
ReplyDeleteI hadn't found your Blog yet when this first showed, so I'm glad you Bumped it.
ReplyDeleteThis was very interesting. I have CF, but don't have the GI tube, so I especially found that part interesting.
Aspiemom
Thanks Nate, I found this very informative, and I really enjoyed it!
ReplyDeleteTrayce
ReplyDeleteThank you for posting that song. That Bible verse just happend to be in my devotion the day my son was diagnosed with Autism. It's so neat how the hand of God works. Please email me via my blog. I can't seem to find a link to you. I would love to have permission to post the words on my blog.
Myra in Fl
What a neat little girl. This helps me understand what someone with CF goes through...Thanks for sharing.
ReplyDeleteThis little girl reminds me of our friends' daughter who is fighting this battle right now. She was near death in September at 11 years old from CF but rebounded (thanks to massive prayer and some great docs) and got her lung function up to 85%. Now, she's had a sudden relapse and lost most of the ground she gained - back to 55% lung function. Watching what CF families have to survive on a daily basis (like in this film) is driven home when you see the life and death struggle each breath can be. I pray for them and for your precious girls that God's hand would be with the researchers and doctors who are desperately looking for answers of how to cure this disease once and for all. It's amazing to me the things all the CF'ers I have seen have in common - they are beautiful on the outside and the inside. If you knew nothing of their CF and what their life out of the public eye is like, you'd never know they had a problem. They are spunky, intelligent and like rays of pure sunshine and nothing can get them down. I see this over and over and it amazes me to this day when I consider how weak I really am in dealing with sickness. God bless you and your girls as you continue the wait for lungs and as your little one passes that 2 pound mark! My husband weighed 3 lb 2oz in 1974 when he was born and dropped into the 2 pound range. He was 3 months early and back then it was truly a miracle he lived and his only problem was that his eyes have a pretty strong prescription in them. He's very successful so it's just so humbling knowing what God can do even in one so tiny and that He has such big plans for them even when they fit in the palm of your hand.
ReplyDeleteThank you for posting this video again as when I tell our other friends about our friends' daughter and Tricia's situation, it's obvious just how much people do NOT know about CF. Education is the key to funding the cure - if people don't realize how bad it is, they won't give. I hope everyone reading this will share this video with their friends.
This was very relevant for me as I have a 10 year old daughter and honestly cannot imagine all that this little girl and Tricia have gone through. Both of your attitudes are so obviously from God that you are shining very brightly.
ReplyDeleteWhat an amazing video.
ReplyDeleteI just turned 50, but as a child, I was a frequent GI patient at Hahnemann Hospital in Philadelphia. There were lots of CF kids on our floor, because CF was considered, at that time, to be a disease of the pancreas. My doctors, Giulio Barbero and Ian Gibbons, were CF specialists.
What's so extraordinary to me is how much is changed. The average life expectancy was probably 10. The kids had blackened teeth from steroids and antibiotics, and they all but lived in mist tents. I even learned to do chest percussions for my friends, because they were needed so often.
CF was a childhood disease, because CF'ers didn't live to adulthood. There was no knowledge of problems with the vas deferens in men or any ideas about fertility in women. There were no long term plans at all, because there was no long term.
Thanks so much for sharing this video and your story. I am completely inspired by how far we have come and how close we are to even more progress.
Best wishes to you and your family.