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My Story

I am a believer in Christ who has been diagnosed with Dystonia.  A disorder in which I do not have complete control over my muscles.  There have been some real challenges and there are some days full of laughter.  It has opened doors for me to meet and talk to people that normally I would have never met.  I have been able to share my faith with others on how God is with me even if He does not "heal" me.  It has made me really think about what is important in life and who I should be putting first, and that is God.  Romans 12:12



My story started back in Summer 09'.  While I was attending a football camp I came home one day with a very sore throat.  In 24 hours, I went from running and throwing the football with my buddies to not being able to walk or talk.  I then started visiting all types of doctors in many different hospitals.  After much bloodwork, MRI's & MRA's the original diagnosis was Sydenhams Chorea.  I was told to wait anywhere from 6 months to 2 years for it to run it's course.  In the meantime because of my lack of consistent muscle control, my parents pulled me out of all sporting activities and guitar lessons.  During my "waiting period" I got a cold that caused me to get much worse.  My parents decided to take me to a different neurologist in Fort Worth that was recommended to us based on my struggles.  He ran more tests plus several genetic markers.  The results came back not positive, but not negative.  VERY INCONCLUSIVE.  However they did mention that I had a derivitive of a PANK2 gene that they believed is causing my Dystonia.  The problem is, all the stuff that this silly PANK2 gene should cause in my body is not being found and that has the doctors scratching their heads.  Now we are just waiting to hear what to do next.  In the meantime, I had to take a 3 month break from Tae Kwon Do but have recently started going again.  Getting back into it has helped me re-focus and strengthen my balance.  I am really enjoying it! I currently have limited control of my right hand so writing has been a challenge but able to do it in the mornings.  I know God has a plan and purpose for everything, there are times I just would love to have a peek and see the outcome. 

James 1:2-4

Glory Be To God.



 

Journal

Notifications

Long Time Since Update.....

Nov 16, 2011 9:12pm

We have sat down many nights talking and wanting to update the Journal but have had a hard time, mainly because this past February my Mom lost her 3 year battle with brain cancer, she was a believer so we rejoice, but it is still hard to write down.  Our last entry we didn't even mention it because it was so fresh and emotions were very high around our house. (Brandon was very close to his Grandma).  Some of you may ask does Brandon have the same symptoms or can he have the same thing, well sure but it would not be because he is blood related.  I am adopted.

On to Brandon!  He is growing like a weed, dare I say he has passed me in height and about to pass Drew, PLUS he is eating us out of house and home. All good!!!!  Seventh grade was a true blessing, everyone at LHJH treated Brandon with patience, respect and like a "normal" teenage boy.  The teachers are AMAZING and the staff in the office, well no words can describe them.  Brandon is blessed.

Over the summer we had a TON of blood work done, guess what, it all came back "normal".  We joke in the car often about this and we tell Brandon to just stop it, the test say he is fine and he will laugh and say, " someone needs to tell my body that". He is an amazing young man to be around.  During the summer we had fun: blueberry picking, taking a family trip to the Texas State Capital, working VERY hard puzzles and just hanging out with family and friends.

 More to follow that will catch us up.

1 Timothy 4:12  



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dmblandis@yahoo.com

Healthcare Facility

Cook Children's
801 Seventh Avenue
Fort Worth, TX 76104
United States