Help with Medical and Travel Expenses for James!
Organized by: Amy Cook Provstgaard
Amy Cook Provstgaard via Crowdrise
July 07, 2015
James is a 4 year old boy who was born with Muscle Eye Brain Disease, a severe and very rare form of Congenital Muscular Dystrophy. He is unable to speak, walk, or sit up without assistance. Developmentally he is at 6 months to 1 year old.
James requires a lot of help. He has a wheelchair, stander, and special car seat. We are very lucky to have insurance and Medicaid, but not everything is covered. We are in need of modifications to our truck to help us help James get in and out for travel.
James is part of 2 clinical studies. One is at the University of Iowa in Iowa City, IA and the other is at the National Institute of Health in Washington, D.C.
The Iowa study involves the best laboratory for muscular dystrophy in the country. The doctors document his progress and symptoms. Along with this trip is a CMD family conference where our family gets to connect with other families who are dealing with CMD within their families. It also provides information on advances in medicine, workshops, and ways to cope with James's disease. We are also able meet with the researchers who work hard at helping find a cure and treatments. This trip is the first weekend of August. We will be flying to each study instead of driving so it won't be hard on James.
As of right now, we will not be attending the National Institue of Health in Washington, D.C. this year due to changes to staff within the study. This does have the possibility of changing!
We are seeking your help with fundraising to help us achieve our goals mentioned above. It is very appreciated and will be used for a good cause! Your help means the world to us and will help us help James lead an easier life!