I am the Grandmother of an only Grandchild with DMD. I have often wondered where to go to talk to others who deal with this in their family. My Son sent me this information in order to communicate with others. I am newer to the use of a computer and may be a bit slow but I sure would like to speak with other families to learn better how to be of help to my beautiful son, daughter in-law and grandson. Thank you, Kathy
About my family:
My son Kurt is my only child and his son Jacob is his only child and our only grandchild. Jacob has DMD and is 5yrs old now. They live in Ill. and we live in Wi. My husband and I usually get to see all of them once or twice a month. My husband, Paul, and I have been in fund raiser walks for DMD that our son has organized for us through the MD fundation.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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Kathy, I am a grandmother of a 4 year old with duchenne. I am on our family farm west of Madison during the summer months. Like you I am becoming a computer user so I can learn more about duchenne and meet others. Perhaps we can be in touch in the summer. I would like to help out or start fundraising for duchenne when I am in Wisconsin. My grandson lives in Houston and I try to see him often. Hope to hear from you.
Hi Gretchen. Thank you for the wonderful letter. You have one beautiful family! One day I will learn to down load some pictures but for now I just know the basics. I was self taught. My son, Kurt, tries to teach me things when he comes to visit but he's so fast I don't follow what he is talking about. Kurt Gg and Jacob live in Palatine IL. I have a brother that used to live in Rockford as well. My grandson, Jacob, is 5 now. He reminds me of your Nick. He loves to come over and play pirate with grandma. We have to wear all the stuff that goes with it. He and I laugh a lot together and he says I am the funniest grandma he has. In all fairness I'm quite a bit younger than his other 2 grandmas so I can be a little more physically active with him. I love it. Thanks again Gretchen. Hope to hear from you again. Kathy
My mom doesn't have a computer--even the electric typewriter was a stretch--so I think it's awesome that you're engaged with the DMD community as a grandmother. I live in Mukwonago--was interested in where your son lives in IL, since I grew up in Rockford.
We have two boys; our younger, Nick, is 9 and has DMD; our older is 11 and does not, so he participates in sports. His biggest frustration with not playing was that he didn't have a row of trophies on his dresser (everyone gets a trophy, regardless of record in the rec league). When he got a football trophy at MDA camp, whoa was it the talk of the house!
Just wanted to touch base. We don't attend support groups through MDA but do do the Walk with the Animals at the zoo in May. You can target all the monies raised to go to DMD research, and the kids love the zoo!
Alicia I won't be able to get a hold of my son until tomorrow night or Friday night but I will ask and I haven't forgotten about the questions of the medical stroller. Get back to you as soon as I know something. When is your appointment? Your friend, Kathy
Hi Alicia. We had a very busy spell around here. I recieved an e-mail from the Servais Family that they put me on their friends list. I just got it today and saw you were also writing to them. I haven't written anything yet but I wanted to let you know that my Son and Daughter-in-law also take Jacob to the children's hospital in Cincinatti and they love it there. Hopefuly you will find it as helpful as they do. When are you going out there? Hope you are also doing well. Kathy