Our Frequently Asked Questions document has been put together with the aim of answering the most frequently asked questions of parents with newly diagnosed CNM / MTM babies. The responses have been provided by parents who have been through the early stages of this condition - it is not intended to replace medical advice but to augment it and to allow parents to make well informed choices when faced with difficult decisions. The information would also be of use to medical professionals who find themselves caring for an MTM baby for the first time.

Thank you to everyone who who has allowed their words and advice to be included here and to Wendy for compiling the answers.

Read our Frequently Asked Questions document (PDF 144 kb).

Parents should also visit the Frequently Asked Questions page on the Myotubular Trust website, where they can ask questions to Dr Juliet A. Ellis a trained biochemist at the University of Bristol.

Further useful information can be found at:

• Myotubular Myopathy Message Board
• Myopathy Message Board
• Terminology