Help the Woods get to MTM Conference!

Our sons Reid and Paley both have a rare, life-threatening medical condition called Myotubular Myopathy. They have a lot of challenges and require machines to eat, breathe, communicate, and get around. This past Memorial Day, we almost lost Paley due to the terrible actions of a nurse who had turned down his pulse oximeter alarm because it was annoying her. Later on, he accidentally pulled his trach out but no one heard the alarm. Marie found him gray, with no pulse, and immediately performed CPR. We thank God that she was able to revive him, but he has been virtually paralyzed since the incident and can no longer do the things he used to...like read, draw, play music, sing, play games on his iPad. We aren't giving up and are continuing to do everything we can to help restore his abilities. Right now, exciting things are happening in clinical trials for a treatment for this condition, and hopefully we can keep the boys healthy until they can receive the treatment!

We want to bring Reid and Paley along with our whole family to a medical conference to see the doctors who study this disease and to meet other kids and families who are experiencing the same thing. Please support us in any way that you can! Every little bit is deeply appreciated!

Organizer

Marie Wood
Organizer
New York, NY

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