As some of you know, my two youngest sons have a rare genetic disease called "Myotubular Myopathy," which gives them extremely weak muscles. They breathe, eat, etc., through machines. Here's a picture of my son Reid after getting his tracheostomy operation:
Here's all the kids together more recently:
Although there is currently no cure, the disease is curable. Researches have partially cured the disease in mice and dogs, and they will soon be moving on to human trials.
There is a three-day conference in Chicago at the end of this month, where the doctors and pharmaceutical companies working on a cure will be meeting with affected families, collecting data on the children, and giving presentations on the latest research. We'd like to take Reid and Paley to the conference, but transportation is a problem due to the amount of equipment and supplies they require. The only way I can think of getting them there while keeping all their equipment powered is to rent an RV with power outlets. I looked into RV rentals in my area, and together with insurance, mileage, and gas the costs will be a few thousand dollars, which is a few thousand dollars more than I have. If anyone would like to contribute to getting my kids to the conference, you can do so through Paypal by clicking the button below (unless one of you happens to have an RV and lives close by and doesn't mind giving it up for a week, in which case, problem solved!).
***UPDATE ON CONFERENCE FOR MY KIDS*** Greetings everyone! Yesterday, I posted a request to support a trip to a medical conference for two of my sons. I just checked the Paypal account, and we have MORE than enough to cover the entire trip, all in less than 24 hours! (My wife is even checking with some of the other affected families to see if anyone is short on cash and needs some help making the trip, since we'll have some leftover donations.) So, thanks to everyone who generously chipped in. I'll post pictures and updates from the conference. No further donations are needed for our trip, but if you'd like to support the conference or MTM medical research, you can do so at the MTM-CNM website. God bless you all, and please pray for us.