Our two youngest sons, Reid and Paley, have an ultra-rare and life-threatening medical condition called Myotubular Myopathy. The disease makes their muscles extremely weak. They cannot breathe or eat without life-sustaining machines. When they were born, doctors gave them a 50 percent chance of surviving their first year. Although they have both had many close-calls and been hospitalized numerous times, Reid is now 9 years old and Paley just turned 7!
In 2015, thanks to some generous donations, our family was able to bring Reid and Paley to a conference for families affected by this condition so that they could meet with other children like themselves and with the doctors studying how to treat them. They were able to participate in research studies through the conference. Researchers now have successfully treated the disease in mice and dogs and are currently working on curing the disease in humans. We hope to bring Reid and Paley to this year's conference so that they can participate in further studies and so that we can learn about the latest medical developments.
In order to travel across several states with two wheelchair-bound children on life-support machines (not to mention our older, unaffected children), we will be renting an RV. With the rental, gas, mileage, and insurance, along with food and hotel accommodations for our family plus a nurse for one week, the costs are quite high (totalling close to $9000 for the 2015 conference).
It would be an indescribable blessing for our family to attend this conference, and it would help not only our own children but others who are affected by the same condition. Please give what you can! Every little bit is deeply appreciated!