Monday, January 4, 2010

I apologize for the lack of updates on here as of late but as they say, "No news is....." Truthfully, it's just no news this time. Tatyanna isn't doing too bad, but she's not nearly as good as we would like. We have noticed some regression but so far, it has been fairly slow. The biggest area of decline is in her strength and stamina and we find that she gets tired much quicker than she did in the fall. There have been times where she will doze off in the afternoon for a quick catnap and this is extremely uncharacteristic for her. Other than that, she is doing fairly well. She had a really good Christmas break and thoroughly enjoyed the mass quantities of books and movies that she received for Christmas. She is still extremely vocal and although she doesn't necessarily have the words, she can still get her point across. She even surprised us several times by yelling actual words at Dora. It's funny how excited the word "Map!" can make a person. :)

Now that the holidays are over, Tatyanna started back at grade 1 today and seemed quite happy to be there. We are really hoping that this part of the school year goes as well as the beginning.

With the new year also comes our next fundraising effort! I hope to be able to fill you all in very soon but want to make sure that we have all the details down first. Keep checking back as I hope to have things ready to go before the end of January. All money collected will be going directly to the fight against Batten Disease on behalf of Tatyanna's Hope. We do not have any trips to China planned at this time and would like to focus our efforts on finding a cure.

In the meantime.....

On January 22 a movie entitled "Extraordinary Measures" will hit the theaters. Starring Harrison Ford and Brendon Fraser, it is a story of a father's fight to save his 2 children from Pompei Disease. His fight so closely mirrors our own struggle in the Batten community and we are all hoping that it will help create awareness of the plight of the many children who suffer from rare conditions. To help give back to the community, Extraordinary Measures has a contest up on their website. The winner will receive a donation of $10,000 to put towards the charity of their choice. My plea to you all is to please take a moment to go to the website: and click on the link "Inspiration Quilt" On page two of the quilt is a video entitled "Noah's Hope:Fix You", you can also find it by typing Noah's Hope into the search feature. Noah and his little sister Laine, like Tatyanna, suffer from late infantile Batten Disease. Please take a moment to watch the video and then vote. Then, you can do the same thing tomorrow and the day after. In fact, you can vote every day! The 2 seconds that it takes may be all that's needed to make a difference. Noah's Hope Foundation will match the dollar amount if the video wins and all proceeds go directly to the fight against Batten Disease. That's $20,000!!! Our amazing kids fight so hard but we need your help. Please vote and encourage your family and friends to vote as well!

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