Wednesday, August 19, 2009

Meet Levi

I got a call a few weeks ago from a family vacationing on the Outer Banks...they wanted to know if they could meet me while they were here...their one-year old son has Cystic Fibrosis, and they've been following our blog since learning of his diagnosis several months ago.

I'm always up for meeting other CFers and their families, especially if I can help give young parents and children hope for the future. Of course, meeting Levi was just as much a blessing for me. Levi is at about the same place developmentally as Gwyneth (I think they even look very much alike), and he did nothing but smile during the time I spent with him and his parents. He even game me a kiss on the cheek goodbye!

Levi's parents asked me if it were true that all CFers tend to be as happy as Levi...of course! As I have mentioned before, there is something very special about CFers...especially the younger patients. I have never met a CFer who didn't have an overly-abundant love for life and for's as if God gives each of them an extra capacity to experience joy to balance out the difficulty of living with CF. Levi is obviosuly no exception!

It's 2009, and Levi's future with CF is much brighter than his predecesors because of the efforts of the Cystic Fibrosis Foundation and the donations of thousands of people just like you and me. And even though there are promises that we are getting closer, there is still no cure for CF. It is for Levi and the thousands of other CFers that Tricia and I continue to be so passionate about raising money and awareness. One of our dreams is to help find a cure in Tricia's lifetime.

My personal goal this year is to raise $10,000 for our Great Strides Walk for Cystic Fibrosis. I would be forever grateful if you would consider donating to help me reach my goal by visiting my donation page Here. Every penny goes directly to the CFF and their search for a cure, and even $1 can make an incredible difference!

Thank you!



The Perkins Family said...

My daughter, Alison, is one year old and was diagnosed with CF last October. I get comments all the time about how happy and sweet she is. I am still teary over your comment "it's as if God gives each of them an extra capacity to experience joy to balance out the difficulty of living with CF." because that describes my sweet baby perfectly.
Thank you for giving hope and inspiration to parents like me. Words cannot express my thanks for your fundraising efforts for the CF Foundation.

Shari said...

What a cutie!

Anonymous said...

Levi is such a cutie...and I agree, he and Gwyneth have many resemblences.

Your blog is such an encouragement to so many. Thank you.

Laurie from MA

Kristi Bowers said...

I wholeheartedly agree with you about CF kids or CF'ers having that extra capacity for joy! That describes it perfectly! I believe God gives them the ability to take things much better and for that I am so grateful! I have always known this about my son with CF who is 8! I am glad it isn't just him :)

Roxanne said...

Did you get the email from the CFF about VX-770? Encouraging news for CFers.

And I agree with you about the joy that CFers seem to have. In fact, it's what initially attracted me to my husband!

Anonymous said...

What a beautiful little guy! And what a wonderful blessing your blog is. You have given this family hope!! This post just touched my heart, as most of your post do!
God Bless you, your family and sweet little Levi's family!

The Country Mouse said...

There's my boy! He actually looks different already - four teeth pushed through on top. :)

Julie said...

Awesome!! And at first glance Ithought Levi WAS Gwyneth!!

Emily said...

He looks so much like Gwyneth! Wowsa. =) It's so cool that you can meet other CFers through your blog!

Emily said...

He's so cute, Nate! And I agree, CF kids are given so much of God's joy. What a joy to meet this little guy!

Jo said...

Consider yourself to now know a CFer missing a sweet disposition. Somewhere in between the abuse and medical neglect of his firat 6 years and the Bipolar and severe Autism he's been diagnosed with since coming home, our son is a CFer with anything but a sweet disposition. He is in fact a tortured soul.

That said, we stand with him and fight every day to help him calm the demons in his mind so he can have the highest quality of life possible for him.

Any one of his issues would be a heavy burden to bear. That he must carry these and seveal others is a burden no child should be expected to understand, to remain happy about nor to face alone as he did for so very long.

I just hate the stereotypes both the one that CFers are always sweet and happy and the one that they are always smarter than your average bear.

CFHusband said...


I'm very sorry. It sounds like your son and your family have had a rough time, and I certainly sense the anger and bitterness in what you've written.

I'm also sorry that your experience has been different than Tricia's. I still stick by what I've said, that I've never met a CFer who didn't have a greater capacity for joy. Life is not easy for anyone...we each are given circumstances that are beyond our control, but we are also given the choice to respond negatively or positively to those circumstances. The biggest reason so many CFers and families are so full of joy is because they choose to be.

Kalani said...

Just trying to spread the word! My friend works at a lab in Arizona and she posted this message: Whole Foods who sells pork for no other reason than to be delicious and clog your arteries, is backing out of a sponsorship deal with our Tucson chapter of the CF Foundation because of research involving pigs dedicated to testing therapies to find a CURE for CF. This research is ethical and complies with all the policies of the IRB. I find Whole Foods hypocrisy stunning and will never again be a customer.

drmichellemicheal said...

I just discovered your blog after visiting the blog of our dear friends, the Gravitts (Jimmie). I was just curious and clicked on your blog, then went on to read PattySue's. I am so touched by your love stories, love for He that created us, love for one another, love for your sweet daughter and love for God's children.

We also homeschool our 2 teenage boys (since early elementary school). They are getting ready to be finished soon, which makes me sad and happy at the same time.

Please know that there are many out here reading what you post and are moved by it!

Praise God! Praise His Son!