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Julie's Website
Update 2006

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

Second grade is done and third is on its way! 

I am marvelling that Julie is now 8 years old.  It seems like just yesterday when I built this website to share her journey.  In that time, I am delighted that several people have contacted me with questions about their child and to introduce their own child affected by Bethlem.  I try to imagine what it would be like trying to help Julie without the help of the wonderful people I have met on the i would be a very different, even more frustrating journey to say the least.
Julie has had a year filled with successes and challenges.  Physically, she continues to make nice, slow and steady progress.  She can now jump quite well and can jump repetitively and can jump over cardboard bricks at PT.  Her hopping has really come along this year and she can hop a couple times in a row which is fabulous!  Her balance is much improved and she can balance on the balance board and the tumbleforms bolster.  At her neuromuscular visit this summer, the neuro and the PT there noticed that this was the first time she did not hyperextend her knees when walking and running.