Channel 13 news came to our home today to help get the word out about Sy's disease and his love of bowling. They will continue to develop the story in the next day or so, but this is the short blurb they've posted so far! Click the video on the right and keep checking for the full story!
http://www.cfnews13.com/article/news/2010/august/139385/Rare-disease-keeps-child-from-eating-food
I just stumbled upon your families story, and I must say, you little angel is gorgeous! Something else that caught my eye...we have the same last name. My husband is a Harger. I'm not digging into your family tree or anything, I just thought it was interesting lol. I'll definitely be praying for you guys!
ReplyDeleteMy son also has EE and is treated @ CCED. If you look on their website, they list several medical flight options. We flew with Wings of Hope last time--completely free of charge. Absolutely wonderful group. In October we are flying with Continental Careforce. $20/person. Very simple to get the flights scheduled. Minimal paperwork. Lots of groups out there that will fly you there free of charge.
ReplyDeleteMy son is 15 and has EE. He is doing fantastic. He was only diagnosed about 5 years ago after many incidents when food was stuck in his throat. He sees Dr. Hofley at Children's Hospital at Dartmouth in NH. My son is on no meds at this time and has not had any incidents in quite some time. He is allergic to fish and we have eliminated all fish and he is doing so well.
ReplyDeleteOur son Has EE,EG,and EC. We also were going to Cinnicinatti Childrens as well to Dr.Putnam he saved our childs life.He was found with this after treating him for a year with reflux here in Louisiana.He is now almost 9 and all biopsy for the last 3 years he has been clear.We have passed most food trials except eggs,fish,shellfish and tree nuts. Our prayers are with you and your family cause life is not easy at all with this disorder.
ReplyDeleteDaniesha: Wow! Wonder if there is some relation there?! Thanks for the prayers.
ReplyDeleteAnon: Thank you so much for the airline tips. We will look into it for sure. We are also flying back in October!!
jmdesrosiers: So glad to hear that your son is doing so well. Encouraging to hear!!
Karen & Jeremy: Thank you for your prayers!! Is Dr. Putnam in Cinci? We see Dr. Franciosi up there... So glad your son is doing better. Great news!!