Mrs. Burschman Posted September 29, 2009 Report Share Posted September 29, 2009 Hey all,I got the news today that my sweet four-month-old niece, Sophie, has a rare and incurable disease called tuberous sclerosis. It causes noncancerous tumors to grow in many organs. She has at least one in her brain, and it's triggering seizures.I hadn't even heard of this horrible disease until today. If you're so inclined, please say a prayer for Sophie and her family. They are devastated to get this news about their beautiful little girl.Amy (Mrs. Burschman) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 29, 2009 Report Share Posted September 29, 2009 So sorry to hear this terrible news for your family. I am thinking of you. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 29, 2009 Report Share Posted September 29, 2009 Added to the prayer list with you! Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 1, 2009 Report Share Posted October 1, 2009 I'm so sorry, Little Sophie and the rest of you will be in my thoughts and prayers.Maxine :0) Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 18, 2009 Report Share Posted October 18, 2009 Can you tell us how she is doing? kari Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted October 18, 2009 Report Share Posted October 18, 2009 Right on it Amy. Prayers for the whole family at this difficult time.I believe in miracles and the power of prayer.xxx'sBlessingsbellamia~ Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 19, 2009 Author Report Share Posted October 19, 2009 Thanks for asking, KayJay!She's doing OK. They're trying a second antiseizure med because the first one wasn't cutting it. This one has reduced the frequency and intensity of her seizures, though she's still having a few per day. They're planning to slightly increase the dose to see if that helps.Otherwise, she doesn't appear to have any tumors in her heart, liver or lungs (for now.) The brain tumors are small, and her pediatric neurologist said they appear to be the type that don't grow very fast, if at all, so that's good. We'll just have to wait and see. Kids with tuberous sclerosis can be almost normal, or they can be severely developmentally delayed. We're just praying and hoping and loving her as much as we can!If you want to see what she looks like, here's a link to a fundraising page I set up in her honor through Citizens United for Research in Epilepsy. She's a doll! That's my finger she's chewing on in the photo. http://cure.convio.net/site/TR/Events/Gene...&pxfid=1220Amy Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 19, 2009 Report Share Posted October 19, 2009 I will certainly include Sophie and the rest of your family in my prayers. I love that you've set up a fundraising site in her honor. I'll certainly make a contribution. Take care, and please keep us up-to-date on her progress,Jana Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 19, 2009 Author Report Share Posted October 19, 2009 Thanks, Jana! That's very kind of you.I set up a fundraising page in Sophie's honor because I figured that some of my friends and family (and me, frankly) might want to do something, but wouldn't know what to do. Now they have an option! I'm trying to raise $1,000 for research. I was impressed with Citizens United for Research in Epilepsy because 96 cents of every dollar given goes to research and advocacy. Can't get much better than that!Amy Quote Link to comment Share on other sites More sharing options...
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