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.
Paige on NJN News
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The story on Paige will air this Thursday, February 26, 2009 and will be shown at 6pm, 7:30pm, and 11 pm on NJN as well as at 5:30pm on 13/WNET.
Article on Paige in the Leader
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the link will take you to the site for the Leader, it is a North New Jersey newspaper. Just scroll down a little and you will find the article.
February - what a busy month
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Paige, Jake and I are really having an interesting month. Paige was in the hospital for a sleep study last week and we learned that she is not reaching REM sleep, she also woke up over 200 times during the night because of this Paige will have her tonsils removed on February so that will mean 2 more nights in the hospital. Then on February 23, Paige will be admitted for her 8th MRI and then on February 24-25 she will have another video EEG. My birthday is the 23rd, watching my little girl being sedated is not the way a dad should have to spend his birthday, we should be running in the park or doing fun things together. But as long as she is in my arms I will be happy! Jake our little destoryer actually spent 4 days in the hospital this month because of a virus and finally I will be having surgery on my back on the 27th of February. Thankfully, Annette has not been in the hospital, she will be busy taking care of us!!!
Paige continues to have a great 2009, she has been so happy recently, crawling and playing with everything in reach. We are so hopeful that this will continue and maybe later this year we will be able to have our Paige Walks party!
Paige will also be on NJN (New Jersey Network News) the week of 2/23, and February 28 is also National Rare Disease Day. Hopefully the media will remember those in the country that continue to suffer from these mysterious diseases.
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