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MM surgeries and fighting the red tape (Read 4285 times)
Mar
Ex Member


MM surgeries and fighting the red tape
Oct 4th, 2009 at 7:56am
 
Another wonderful outcome, thank God, but again it only shows that you have to be aggressive and do whatever it takes to get the proper treatment with MMD.

http://www.newarkadvocate.com/article/20091004/NEWS01/910040334/1002/Johnstown-10-year-old-recuperating-after-surgery-for-rare-brain-condition

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Lore
MM.com Benefactor
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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: MM surgeries and fighting the red tape
Reply #1 - Oct 4th, 2009 at 10:45am
 
Mar,

Thanks for sharing Jonathon Cromwell's story and successful outcome.

Deann, Jonathon's mother, possted on the Guest Book back in June requesting input to her questions on MM surgery. The Cromwell family lives only about 20 miles from me.

Although Nationwide Children's Hospital in Columbus, Ohio is an excellent facility and has successfully treated many children and saved lives, I was disappointed to learn there is still a lack of knowledge in the medical community regarding MoyaMoya and that 5 years after my struggle getting Cubbie properly diagnosed and treated, MM continues to be a struggle in this community. That said, I was relieved to learn that Jonathon was able to get to Stanford and be successfully treated by Dr. Steinberg with the help of many in the community, including the Governor.

I can only hope this article helps to bring attention to this disease and more medical professionals in this community will take note and take a genuine interst in this disease so MM patients can be diagnosed and treated in a timely fashion without devastating consequences.

Lore

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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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