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We Bellieve

Organized by: Alice Barnawell-Seibert

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I am raising money through internet sites and live events to help cover the medical and related expenses that her family are facing as she fights for her life. The following paragraphs are copied directly from Bells mother's Facebook page when she updated all her family and friends of bells condition last week........I'm going to go through a quick run through of Bell. After all she has been through, it doesn't seem real to us either. She was diagnosed with Cystic Fibrosis at 2 months (December 2005) after a month of in and out hospital stays. She did great until January of 2007, she ha...d what is called a "tune up", a 2 weeks stay at Childrens Hospital of Atlanta where she was pumped full of all the antibiotics required. We found out we were lucky to have had 2years with no tune up. Most CF kids have one every six months. She continued to do really good, with only a few tune ups here and there. Then in mid 2008 she got something she couldn't shake off. In 2009 she was in the hosoital more than she was out. They said she was too healthy for a transplant though. In 2010, she was evaluated in St. Louis and found to be a good candidate for transplant. They warned us a transplant could bring new issues about. We were aware of them, but decided we would chance instead of letting her not have a chance. We moved to St. Louis, January 2011. She got her first transplant 9/10/11. It did not go well. She was in hospital for 5 months and, among other issues, went through rejection. After a year or so of issues with her new lungs, she was evaluated for a second transplant. We asked her if she was up for it. Her reply, "whatever keeps me with you longer". We didn't look back. On 11/25/2013 she received her second double lung transplant. She was up and out in 2 weeks. She did great!!! Then came rejection. Then came PTLD, a type of cancer associated with transplant. She was treated for that, which is different than treatment for just cancer. She seemed to be doing really well. We were making plans for her to go to school and finally get her Make a Wish. Then in June 2014 she got an infection in her sinuses which led us to another tumor in her sinus cavity close to her right eye. The tumor on her lung seemed to be getting better, but after further evaluation, it was not. Last week they told us the tumor near her right eye was growing at a rapid pace and action needed to be taken as it was nearing her brain. They suggested treating the cancer as a regular lymphoma, as opposed to PTLD. She has begun chemotherapy. Its going to be gut wrenchingly tough on her. She is in such pain already because the tumor is pressing into the nerve of her right eye and she gets headaches. She's drugged up most the time. She will lose her hair. The docs say we should know in a weeks time if the chemo is working. When we know, we will let y'all know. Believe it or not that was the quick run down. I know a ton was left out. All her surgeries besides the transplants, all her regular kid injuries, and a lot of other issues she's had stemming from CF. We really need that cure!!! Ill try to answer any question. Billy will correct or add to anything I missed. We just continue to ask for prayers and continue BELLIEVING!!! MIRACLES HAPPEN EVERY DAY!! -


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Alice Barnawell-Seibert

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