I've reached your site from an email from a member of the DGM
"german association of muscle diseases (Deutsche Gesellschaft für
Muskelerkrankungen).

Here's my story:
Our son Philipp was born on the 6th of June 2005 in Lüneburg, Germany, after a 33 hours birth "marathon" and with the "help" of a vacuum extractor. He was not breathing at all and so immediately transferred to the child hospital in a mobile ICU and attached to a vent.
He was very floppy and weak an did not breath at all indepently. Several tries to put him on CPAP were not successfully (sometimes he managed to breath 3,5 days). His blood was genetically tested for the common muscle diseases adn after 1 1/2 months a muscle biopsy was done. In his blood they found nothing. Last week we got the results from the biopsy. The doctor told us that they found "rods" under the electronic microsscope they the diagnoses is that he had the nemaline myopathy.
Unfortunatly the severe neonatal form. He told us that Philipp had a
life expectancy of maximum 2 years. We were depressed and I search the net for some more information and found only infos that approved the doctors prognosis.
Your site gave me and my wife a little hope that Philipp can survive a
bit longer and perhaps will grow stronger because of the fact that every
patient is a different case.
Philipps movement since his birth have increased. He can now kick with his legs and move his arms (yesterday a found his ears :-) and checks sometimes if it's still be there!). And if he is in good mood he smiles and his looks are were alert).
The doctors now tried for about 2 weeks a "respirator" device (a modern form of the "iron lung", I don't know the english word), but he don't like it much. Sometimes he managed 2 or 3 hours, sometime only 1/2 an hour. Another option is a trache. We don't know if this is the right way! That's all for now. Thanks for your help.

Regards,
Philipp, Guido and Ludmilla Paschke