Progress continues….
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Paige continues to get stronger and stronger! She has recently begun to pull to stand again and is trying to crawl up the stairs. She had an EEG the other day at Hackensack Medical Center and her EEG showed so much improvement that they are taking her off one of her seizure drugs. This is the best her EEG has looked since just after she got sick.
Training for Rocky
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If anyone knows of a trainer who could help us train Paige’s dog to assist her with walking, retreiving objects etc, please let us know.
Thanks
Paige on Good Day New York
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http://www.myfoxny.com/dpp/good_day_ny/090709_Girl_with_Mystery_Illness
Picture of Paige on the European Rare Disease Website
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http://www.eurordis.org/secteur.php3?id_rubrique=1
2009 continues to be a great year for little Paigey!! She is crawling and pulling to stand better than she ever has and recently has been showing interest in Go Diego Go. She is extremely alert, and hasn’t had a seizure in 6 months!!!
Annette and I are so thankful for the improvements she has made this year and continue to hope and pray that ‘dada and mama’ are just around the corner!
Paige walking
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http://www.youtube.com/watch?v=IUyJrFrWO78
here is a video of Paige using her new walker. Last year something like this would have been impossible!!!
Some new news……
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So we just found out the NIH found changes in two of Paige’s genes that Annette and I do not have so they are sequencing those genes to see if those changes are the cause of Paige’s condition or if they are simply changes that are what makes each of us different. We of course are hoping for the 2nd!!! We hope to have some additonal information in about a month.
Progress continues….
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2009 continues to be a great year for Paige. While the next two weeks will see Paige go for her 9th mri and 20th video eeg her progress continues! She has been crawling all over the house and will head directly towards toys/objects that she wants to play with. She has been sipping through a straw something she hasn’t done in about a year and she continues to try and grap and hold objects. Just last night we noticed her chewing on a french fry, not the best food in the world but if Paige chews a fry then she can have them all day long.
South Bergenite Article on Paige
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An article on Paige appeared in today’s South Bergenite newspaper, below is the link.
http://www.southbergenite.com/NC/0/2378.html
NJN STORY ON PAIGE
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http://www.njn.net/newspublicaffairs/healthreports/
NATIONAL RARE DISEASE DAY
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This Saturday is the first time Rare Disease Day will be recognized in this country, hopefully in the coming years it will gain more and more media and politicial attention. While rare diseases only effect under 200,000 people there are over 7,000 such diseases making then not so rare!!!
Annette and Paige will be attending an event tomorrow in Central Jersey and will share Paige’s story and our search for answers. Unfortunately, i will not be able to attend because i will be having back surgery.
Please remember Paige and the thousands of others who suffer from these mysterious diseases in your prayers this weekend.
keep looking »