My name is Vicki, I am the proud grandmother of five AWESOME grandchildren. 17 yr old Jamie, 10 yr old Brenden, 5 yr old Sierra, 6 yr old Briana and our special angel, 6 yr old Carson. Carson, at age 3 was diagnosed with Duchenne Muscular Dystrophy. Because of who Carson is, I am a much better person. We need more Carson's in this world!
About my family:
I am proud of my daughter (Kori), my best friend and the GREATEST Mom. She has shown so much courage and faith through all of this that it makes her my hero. She has become a strong voice in our community. She gives selflessly and completely to find a cure for DMD and to the endeavor of supporting families of children with Duchenne Muscular Dystrophy. Her strength is amazing and an inspiration to us all.
Name(s) of child(ren)/individual(s) with Duchenne:
Carson Dale McIntyre
Age(s) of child(ren)/individual(s) with Duchenne:
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I couldn't tell if you are from Carlsbad or if your grandson is, but I am from San Diego and my mom and dad (grandma and papa to Elijah) live in Mission Valley if you ever wanted to connect with other grandparents. God Bless,
Sorry to hear of your grandson having dmd. It sounds like he has a great family and great support! That is a blessing!
You may want to check out Califorian families under groups to learn about any resources that may be available and find out if the same resources are available in Utah. We also share ideas that others can benefit.
Another important area under Discussion Forum is the Advocacy section. This is the one place I feel we can have control with dmd to help our families. We are trying to get the MD Care Act re-authorized. We have our California Senators supporting it and we are trying to get more House members to support it! This is the one area that will help to advance and make positive changes for our families. We can move things along a lot quicker. We still need to get sign ons so we can get this very important bill passed. If it does not pass this time, we will be back until it does pass. Too many families are affected by muscular dystrophies and this bill has specific language for duchenne/beckers so research monies will be allocated for dmd.