Tag Archives: Knights of Columbus Council 3533

TETRASOMY 8p MOSAICISM is NATIONAL!!!!

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My heart is exploding with pride and joy and my eyes are crying enormous tears of happiness!  After 3 years of fighting to get the word out about rare chromosome disorders, TODAY, the dream came true!

WPIX Channel 11 Morning News aired a segment by reporter, Dan Mannarino, about J-Bean and Izzy meeting for the first time.

The PIX web site has received thousands of hits and Dan got a call from AOL.com, asking to make our story the video of the day…

Now, when you Google the title of the video, the search results show the video is on the web sites of KTLA (Los Angeles), Fox 5 San Diego (San Diego), Chicago Tribune (Chicago), Fox 59 (Indianapolis).

My hands are still shaking as I am typing!

And I just found out that a parent registered with The Chromosome Disorder Outreach because of the story.  AMAZING!!!!

Of course, I need to thank Laura Gallagher for bringing it to the attention of the executive producer at WPIX News (name withheld until I get permission to add it), Dan Mannarino of WPIX Morning News, Carmine Iacullo and the Knights of Columbus, Azriel Novogroder of Novogrow and the simply wonderful Kelley family…none of this could have been completed without each and every one of you!

Without further ado…THE VIDEO!!!

http://www.wpix.com/videobeta/e501b642-e287-404f-a081-5f2d7c0f095b/News/Two-Girls-Battling-Rare-Chromosome-Disease-Meet-For-First-Time

MEDEK, Azriel and Josephine

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I don’t even know where to begin this post.  I am filled with excitement, pride, wonderment, anticipation, love, joy and just plain happiness!

After much resistance, mainly because of finances, we decided to give MEDEK a chance (a portion of the funds from the Knights of Columbus Council 3533 Pasta Dinner is funding this).

What’s MEDEK?  Click on this link for all the details… http://www.cuevasmedek.com/.

In my words, it’s a form of therapy that focuses on the use of the child’s balance and core muscles to improve gross motor skills like standing and walking.  But what I can say now can’t even express what these videos show.

And WHO is Azriel Novogroder?  The extremely patient and caring PT that has 15 years experience with MEDEK.  He was trained by the creator of MEDEK, Ramon Cuevas.  Many families must travel across the country to meet with Azriel and I feel blessed he is in our backyard (well, up the Garden State Parkway about 29 miles, but that’s better than having to travel from Wisconsin or Maryland!).

Based on Azriel’s evaluation, Josephine will see him once a week for 8 weeks, at which point a re-assessment will take place.  Azriel has already said he can see great things coming from Josephine.  Well, of course, she’s our little girl with so much spunk, drive and love.  She won’t give up and neither will we.

There are 10 (yes, 10) videos here.  Take a your time, grab a doughnut and coffee or glass of wine and some chocolate and enjoy the gift given to us this Christmas 2010.

(A word to those affected by the crying, turn down the volume because it’s loud and steady).

Merry Christmas, Dearest Family and Friends!  It truly is for us.

Azriel & Josephine Meet

***My Second Favorite:  Balance Board

The Box

Leaning on the Table

Standing and Squatting

Starting to Walk

****MY FAVORITE:  First Step and Long Squat

Sit to Stand and Stepping

Assisted Walking

End of Evaluation