A blog about my daughter and her fight against Canavan disease. Also a blog to increase awareness about Canavan Disease.

Owner: Hollie_Lichtenwalter_Secrest

Listed in: Family

Language: English

Tags: Canavan disease, Lily Secrest, Lillian Secrest, Genetics, Kids

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Latest Blog Posts for Fight For Lily's Future

  • on Apr 26, 2014
    Well hello there! Long time no update.....I know. I would tell you that I am going to do better with updating but I don't want to lie to my readers, so I won't. ;-) But there is a lot to update you on. The most marvelous of the end of...
  • Slacking off again!
    on Nov 15, 2013
    I know, how terrible! I've got some thing to update you all on and a request. But first, the update... Lily very much enjoyed summer school and Taz began riding the bus. That went well! He's doing well on the bus and hops right up when the bus get's...
  • An update...already? Wow!
    on Jun 27, 2013
    That's right folks.....I am all over it this morning! Ahhh coffee! Anyway, happily everything is going well. Last Friday we went to Cedar Point thanks to an amazing group called A Kid Again. We had a blast! It was warm but with the breeze off of Lak...
  • on Jun 13, 2013
    So I am very, very, VERY late with an update and for that I must apologize. So let me start by saying that in the past year Lily has only had 2, yes that is right, count 'em 2 seizures! And one was triggered by a fever. So this is really great. Not s...
  • Well......
    on Nov 10, 2012
    I know I was going the route of the Vlog but I am really sick right now but feel that I need to get this posted so you will have to read instead of staring at my gorgeous mug! Hahahaha! Ok so on the serious side.......something is up. Two years ago...
  • First Vlog!
    on Sep 28, 2012
  • Just a small update
    on Jul 31, 2012
    So everything is all good. No more seizures since the last. Though I am still a bit on pins and needles. However, the increase of meds seems to be doing it's job so let's all keep our fingers crossed! I thought Taz's was alerting last night but no he...
  • And here we go again!
    on Jul 23, 2012
    Yeah, so I am sure you can tell by the title of this post, you know where this is going. Last Tuesday, Lily broke her streak. She had been almost seven months without a hospitalization. Well, that night she and I went to be. She fell asleep and was s...
  • Introducing......
    on Apr 1, 2012
    So let me start off by saying everything is going great with Lily....nothing really to report. But today's blog I would like to introduce you to Lily's brother in Canavan, Keegan. Keegan is a happy, cheerful 6 yr old boy with traditional Canavan livi...
  • Over due update
    on Mar 13, 2012
    So I know that I have been really, really lazy about updating Lily's blog and for that I must apologize. So anyway here is the over due update!So exactly one month ago Lily had a short 30 second seizure first thing in the morning (are we really going...
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