These two doctors saved my sons life - Leukodystrophy Su...

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These two doctors saved my sons life

Zachary5 profile image
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orchard MD, Paul J.orcha001@umn.edu612-626-2313 Pediatric BMT

Tolar, Jakubtolar003@umn.edu612-625-2912 Pediatric BMT

I recommend contacting them. all the other "specialist" had told me to make my son comfortable and let him die because he already had symptoms.

Then there was the insurance what a mess however i went to the top out of the gate and got it sorted out in 5 weeks and it took getting the commissioner of health and human services involved Don't be afraid to make noise

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Zachary5
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MineshGokal profile image
MineshGokal

Thanks for sharing Zachary5. I am pleased to read you got two good doctors eventually. We've worked with Dr Paul Orchard before.

ALDLALO profile image
ALDLALO

Zachary5 was there any aggressiveness after transplant?

binhnguyen1976 profile image
binhnguyen1976

My 9- year-old son was diagnosed to have ald last year ,my son now can't go to school, can't talk or hear or do anything.is it too late to treat? please help me. could you ask them for me Because i'm from vietnam and i don't know much about English language so it's very hard to contact or communicate to them by english.

thankyou very much.!!

tramynguyen profile image
tramynguyen in reply to binhnguyen1976

chào anh chị, hy vọng anh/chị còn đọc thư.

Em có em trai bị bệnh này và đã qua đời. Tình trạng của cháu bé nhà anh chị như thế nào? em cũng là người có gen thể lặn bệnh này và em mong muốn gặp những người như em để có thể trao đổi và có thể cảm thông hơn. Anh/chị có thể liên lạc với em qua mail nguyenphuongtramy12@gmail.com hoặc gặp cá nhân ah. Em có thể giúp đỡ cháu và gia đình.

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