http://www.boston.com/news/local/massachusetts/articles/2009/01/09/old_fashioned_lifeline/
The front page:
The web video:
Thanks, Adam for putting this one in motion.
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This is the story of Eleanor Brogan who was born in April 2006. She was born missing 90% of her small bowel and 20% of her large bowel. This made her "Short Gut" or "short bowel", hence the name of the blog. Currently she is being treated by Children's Hospital Boston. She was the 23rd child to go on the new lipid for TPN, called Omegaven. Which has saved her liver, kept her off the transplant list and we believe saved her life.
13 comments:
Yippy, what a star! Look out Hollywood!
I had to check out your blog after reading Ellie's story on boston.com today. What a beautiful little girl you have! Happy New Year, and may Ellie's health continue to do well!
As a mother of 5, I can only imagine the horror you have faced. My 2nd child - a daughter- had liver surgery at Childrens when she was just 2 weeks old and she is now a happy, healthy 21 year old. They perform miracles there and your daughter is so lucky to be in the hands of great doctors and nurses. Good luck to all of you and I will pray for Ellie!!
I ended up here after reading the Globe article this morning. It's so great to hear a story with lots of hope and promise. As a healthcare worker in Boston it's so tough to see the kids when they come in, but Ellie's pictures and videos make the tough work worthwhile because it means that the kids can and do get better. Best of luck to the three of you!
What a little cutie! I am sorry that she has had such a rough lot on the health issues but so happy to hear that the treatment is helping. You can tell by her pictures that despite the treatment, she is a happy little girl!
Hooray! Still brings tears to my eyes thinking about the early days. I added a link to the article on the media section of the Omegaven wiki.
Incredible piece. You two were so well versed and composed in the video - you did an incredible job - Abby all those NBC30 Live Shots at MAIFE paid off! :)
Great piece.
I am so happy for al of you, bust most of all for Ellie. I lost my little boy ( he too was born wiht Short Gut syndrome)to liver failure. I only wish I had know about Omegaven before. But I wish the very best to Ellie and hope she never has to go back to TPN.
Great job Ellie!!
I was compelled to check out your site after reading the very moving article in the Globe today. What a beautiful little girl you have, she is so lucky to have you and CHB on her team. Wishing you good health and continued bouncy merriment this year.
Boston area mom of another Ellie (Eliana) born in '06!
Ellie and the trampoline are quite a combination! I'm so appreciative of the role you three have played in our family's life. And we are only 1 of many. When I think of how difficult it must have been to make the time and use your precious emotional energy to write those early blogs when the future looked so grim, I'm once again amazed and grateful. Here's to a year of continued growth and weight gain, no need for TPN, and lots of bouncey moments!
A group of us in Wellfleet, Mass. are touched by the story about Ellie and send wishes for a healthy, happy new year. Our library is about to embark on a town-wide reading project focused on a book about menhaden - The Most Important Fish in the Sea by Bruce Franklin. Now we know it is not only critical to the health of our oceans and our working waterfront, but to a very wonderful little girl Our reading project will include efforts to save this fish.
I read about Ellie in the Globe. You are incredible parents. I am in awe. Go, Ellie!
Great article! I originally saw the link and "shout out" on Nora's blog (my adorable short gut niece). I must admit it's been a while since I've peeked at your blog since Nora has been doing so well. Glad to see Ellie is doing fantastic too! I loved the images of her bouncing on her trampoline! Thanks for continuing to tell your story for all the other parents out there!
Jenn
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