DISQUS

revme · 1 year ago

Wow -- what a moving piece. Thank you very much for writing it.

Bill · 1 year ago

Thanks for sharing that with us and reminding me of why I love music so much. Songs like this touch us all. C'mon folks, let's help make this fundraiser work.

allen · 1 year ago

For what it's worth, I lost my daughter 2 years ago to this disease. It's a mean illness, as many are, but, in this case, more so, because it affects children. Some, fortunately, get to grow to adulthood, while others, like Lizzie, are lucky to reach their 13th birthday. One thing I have come to learn about CF kids is that while they might not grow too well, physically, they are among the wisest children I have ever known. But, with all the missed school and medical costs, some of them need some extra help getting to college.
For them we have started the Elizabeth Lulu Scholarship Foundation. www.lizzielulu.com.
I am not mentioning it to try to siphon donations, I mention it because, as you enter this world and meet some of the most amazing people you will ever have chance to meet, just remember that we are out there. Send a teen our way and maybe he or she can get a few extra bucks for college.
We are in the process of choosing our two new recipients for 2008. It isn't much, but it's the best we could do.
My heart goes out to you.
If there is anything at all that you want to ask, discuss, commiserate, I am here.
Good luck.
My heart goes out to you.

Allen · 1 year ago

Apologies for the redundancy at the end. It was difficult to read your account without welling up myself.
Again, feel free to contact us if you have any questions. allenlulu@gmail.com

Joe · 1 year ago

Thanks for sharing that. I'm going through a lot of those emotions now as we recently found out our 2-year-old son has autism. I can definitely relate to the emotions and frustration you deal with when you receive a shattering diagnosis.

Nancy Seid · 1 year ago

Scott,
Thank you for writing and posting this story. It's great, though heart-wrenching, to see this in print, and I wish you lots of luck with the Great Strides fund-raising. Jacob is very lucky to have you as his dad.

cj · 1 year ago

my heart is with you and your family, Jacob looks like a tremendously strong little boy :)

bvladika · 1 year ago

Scott, you are gifted and not just as a writer. You are gifted with the opportunity to make a difference with this disease and are making the most of it. Keep it up.

WHarrisBullzEye · 1 year ago

As the father of a 2-year-old girl, I feel for you, man. Great piece. I'm sure it felt good writing it, too; sharing goes a long way.

Lisa · 1 year ago

The song just makes Jacob's story all that more poignant. Good luck to your family. Some of the most influential people in my life are those who are most resilient--those who have fought unthinkable fights and lived to tell about them. Jacob will be one of these people.