My Child Has a Disability: Where Can I Get Help?

Posted by Jason on Mar 20th, 2008 in Muscular Dystrophy | 3 comments By Ronda Del Boccio I can only imagine what my parents went through when they discovered that I was a “special needs child.”  They realized that my eyes didn’t seem to track the way they should, so they took me to the doctor, to an ophthalmologist, and even into the hospital for a procedure to figure out what was wrong with my eyes. My name is Ronda Del Boccio, and I am legally blind.  I am not here to talk about me, but I know that if I tell you a little of my story and of the story of my parents, you will get to know me a bit better.  I really love talking with parents of children with...

I would wanna…

Posted by Petey on Mar 3rd, 2008 in Duchenne Muscular Dystrophy | 1 comment I would wanna be like other kids. I would wanna have more freedom to take care of myself. I would wanna get in the shower by...

What you need to know about Duchenne Muscular Dystrophy.

Posted by Jason on Mar 2nd, 2008 in Duchenne Muscular Dystrophy | 0 comments Duchenne Muscular Dystrophy is one of the most severe forms of MD. This is what Petey suffers from. Here are some resources that helped me better understand this disease.   Parent Project (DMD and it’s progression)   Health Line   Both of these sites give great information on what it is and how it progresses. Please take some time to familiarize yourself with this disease. I will warn you that it can be very upsetting and difficult to learn some of the details. Thanks again! Also include any other resources that you’ve found to be helpful as a...

Great resources to learn about Muscular Dystrophy

Posted by Jason on Feb 29th, 2008 in Muscular Dystrophy | 0 comments Here are some diffferent resources that will help you to better understand this disease. Basically Muscular Dystrophy is a group of more than 30 genetic diseases that are characterized by progressive weakness and degeneration of the skeletal muscles that control movement. There are 9 diseases that are ALWAYS classified as MD. One of them is Duchenne. That is what Petey has. I’ll go into more details on this in another post. For now check out the list below. http://www.mdausa.org/disease/40list.html (a list of different MD diseases with...

Quest – the ultimate magazine

Posted by Petey on Feb 28th, 2008 in Muscular Dystrophy | 1 comment I was on the Muscular Dystrophy Association (MDA) www.MDA.org website today. I found out that they have a magazine. The name of the magazine is Quest. They are always looking for good content. So I am going to do some interviews with them. They are looking for many different topics to talk about. I want to talk about the way we are raising money for a van for Mr. Marshall. The coolest thing I saw was that there is a USA powerchair soccer team. Mr Marshall and I are going to look into what it would take to be apart of powerchair soccer. I tell you more when we find...