I live in Pottstown, PA and have two grandsons (ages 5 and 8) with Duchenne. I am reaching out to get more Pennsylvanian constituent activity when PPMD advocates in two weeks. If you know of any other families in PA could you please share?
I am sending out the following reminder to maximize constituent activity for PPMD's Advocacy effort coming up in two weeks. We will increase our chances to get government support for our boys by sharing how Duchenne has touched our lives. You won’t even have to leave your home. Gail If you can't attend PPMD’s 2012 Advocacy conference in Washington, DC, there other ways to to advocate and help get government support for DUCHENNE. To date, we only have 2 or Pennsylvania’s 19 Congressional districts backed up by actual Duchenne constituents. Those of us that are there will pick up other PA districts that are not ours. We need to have input (personal stories) from 17 more Congressional Districts in Pennsylvania to help our boys as effectively as possible.
YOU WON'T EVEN HAVE TO LEAVE YOUR HOME!
The goal this year is called 50 STATE CHALLENGE . This means we hope for Duchenne advocacy input from constituents from all 50 states and, hopefully, all congressional district. Pennsylvania, so far, needs input from 17 of its 19 districts. Here's how to do this without traveling to Washington – or anywhere. WE STILL HAVE TIME TO DO THIS.
QUICK WAY: You can sign-up for the Packet Drop Off (link provided above and below) where you can also fill out a quick survey (include a photo if you wish) regarding your situation. This information will be included in the packet delivered to your Congress rep.
MORE-IN DEPTH: You can also get free help to create a more in-depth one-page flyer about your situation that can be included in the Drop Off Packets and delivered to your representatives by those who do go to Washington. The flyer telling your story can be duplicated for additional copies, easily sent as an email attachment, and can be easily edited for other Duchenne-related awareness and fund-raising purposes. Visit link below to see a sample flyer.
SHARING OUR PERSONAL STORIESraises awareness, raises concern and makes others want to join in the fight against Duchenne.
Sean has a good personality and can be the sweetest child at times. He takes prednisolone on the weekends and then I can tell a change in his attitude. He gets angry easy and yells alot. I just try to deal with it and realize that the medicine affects him. I raise Sean as if he were a so called "normal" child because I don't want him to feel different or become uncontrollable. He has a 14 year old half brother who has lived with us for the last 6 sixs, so I try to treat them the same. Of course everything can't be handled the same but I don't want Sean to feel bad about himself or depressed. Duchenne's MD has also affected Sean mentally so he is delayed some and doesn't quite understand things fully. He is 10 but has the mind of a 5 year old. He understands that his muscles are weak and that he's not the only one affected with this type of disease. I teach him to love Jesus and know that he will never turn his back on him. Sean smiles all the time and is very loving. He hurts sometimes but still remains happy. I'm thankful that God has truly blessed his spirit!
I am new to this website and am just trying to meet new people who share a son like mine. Your son looks like a happy, handsome young man. I'm sure he is a blessing to your family like my son has been to mine. I hope to hear back from you. God bless and cherish every day!
I am also worried about the short stature and the roundness of the face. I am so sad to see that my son will be transformed. My son has only been on deflazacort for 9 months, he is 5.
But looking on this site i can see that the boys all have this similar look. Being on deflazacort has also changed his demeanour, he is aggressive and difficult. It's been such a big adjustment. I am having a hard time accepting all this.
I am not a good source since Jared is not taking any supplements or drugs yet. We see Dr. Wong in November and will take it from there. There is a lot of good discussions about this so check out info there regarding steroids. There are lots of people currently discussing this now.