Imagine you were told that you or somebody you loved was only expected to live to their early 20's (I realize that many of you don't have to imagine this...).
That was Tricia's prognosis when she was just a few months old.
Tricia has seen many of her CF friends from her childhood days at Children's Hospital of Philadelphia (CHOP) pass away before her.
Fortunately, because of the generosity of people like you and I, Tricia is nearly 26 years old. Millions of dollars have been raised through the Cystic Fibrosis Foundation (CFF) in the past several years...every penny has gone into funding research for new treatments and the search for a cure.
And every day, the prognosis is becoming more hopeful and the cure is becoming one day closer to being found.
Seth Soria is 3 years old. He was diagnosed with CF a little over a year ago. Based on the statistics, Seth has a 50% of living to see his 37th birthday. If you met Seth without knowing anything about him, most days you probably wouldn't even know he was sick.
Although I have not met Seth, I do know his grandmother, Mary.
Mary was introduced to us by the CFF office in Raleigh just after Seth was diagnosed. Mary and the rest of Seth's family were looking for another CF family to talk to because they knew very little about the disease. Tricia and I were just beginning to organize the first ever Great Strides Walk for CF on the OBX. Mary and "Seth's Angels" joined our team that year in helping to organize the walk, and with the help of hundreds of other people, we raised over $30,000 (which I am told is great for a first-time walk).
While Tricia's journey with CF has been ongoing for many years, Seth (and thousands more) is just beginning his journey.
Please, take a few minutes to check out Seth's Story and consider what you might be able to do to insure that Seth can live well beyond 37 years.
Thanks for the shout out! I am starting a team, too, here in Columbus!
When I was diagnosed in '93, they had just started the policy of keeping CF kids away from each other for infection control. As such, I only really knew one kid with CF, and I'm not sure what happened to him. So I have never had the experience of watching one of my friends die. But, coversely, I have never had a friend with CF (well, in person--the blogosphere has changed that!) that understood what I was going through. CF can be very lonely.
I am SO GLAD that you all seem to be doing well! My prayers are always with you.
Thanks for posting about Seth...all children need our help and protection - no matter the age!
My daughter just had a very hard day @ school today due to rude comments made in her class where she had presented a speech on Organ Donation. She lost many friends, as you said Tricia did, as well. Then to be ridiculed...it's so sad.
Prayers for Seth & his family,
Prayers for you & your girls,
Prayers going out for little Seth and his family!
Nate, your love for your wife continues to flow out of you! Thanks so much for all the cf info you have provided this week. I appreciate the education, not to mention reading other people's stories. I especially like the entry about Tricia not being in a fight & mentioning that God does not make mistakes when he creates us. We are praying for all of you right now. Hope the Lord has more encouragement for us that is demonstrated through you, your lovely wife & your sweet daughter.
~Sara in MD
This is a nice post...I think its important to not only care for your own children and family, but also educate people as to how you can care for others in similar situations.
I started reading your blog a while ago. I'm sorry, I can't find the post, but I remember it ended in "I'm so sorry, girls". After that, I have been following (lurking until now...sorry!) along.
This may seem odd, but we'd (my wife and I) like to send Gwenyth a little care package. Having been through the birth of a preemie (not as tiny as your daughter, but scary nonetheless), I can only imagine how hard it is to "keep it together". Not may guys post on these blogs, but I feel I can relate, at least in part, to what you're going through.
If you'd email me your email address at firstname.lastname@example.org, I'd like to talk to you privately about getting something out to you. I know its hard to trust people in the blogosphere, but I thought I'd offer anyway.
Thanks for sharing Seth's story. I have lost way too many friends to this disease. Your blog has spread more awareness than any other site I have seen. You and Tricia are great!!!
I happened to catch the bottom end of your post. Please know that I'm not doing this because of Seth. Please could you like a post to Joshua Sams. He's a 9 week old baby busy dying b/c his encephalocele burst. http://mnssams.blogspot.com
If you don't I understand. Really I do.
No problem Nate!!
I'll ask my directors if I can get a copy of the promo for you as I think it would mean a lot to you and Tricia (and it would mean a lot to me for you to see it).
Thank you so much for your help in bringing awareness to cystic fibrosis and organ donation. I am living proof that it WORKS and I know one day soon Tricia will be too. I feel blessed to have taken this journey in life and so glad it has made me who I am today....grateful, happy and HEALTHY!
Love to you and yours!
I'm up to date on the blog. I read about Seth and the young lady in SA. I'm praying Trisha sets a new world record for CFers life span!!
Thank you so much for your heartfelt posting. Increasing awarness is the best step in finding the CURE. We all look forward to Tricia and Gwenyth strolling around the football field in Elizabeth City at this years Walk! Our prayers continue to be with you and your girls. Thank you for all your thoughts and prayers for Seth. He continues to amaze us everyday with his strength and courage!
if your able to, can you let us know when these CF fundraiser walks are going on? it sounds like the seth's angels group is local here to the triad and your just a hop down the coast... if you get dates for them can you post them? i would love to walk in honor of my 8 yr old cousin with CF.
Just voted for you as well! You DEFINATELY deserve to beat me!
I had a friend who passed away last summer from CF. Her name was Shana Reif. She and her husband, like you and your wife, took even the toughest situations and used them to bring glory to God. It is amazing to see how God has and will use people like Shana and your wife Tricia to bring honor to Him. It is also great how much work you do to try and make people more aware of CF and Organ Donation. Keep it up!
PS. Little Gwenyth is looking so good! Her little face has changed so much even since I started to read your blog!
Yeah for 37 years... I am at year 34 (with CF). Hoping and praying for many more.
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