My name is Cathie Bullis and we have a grandson named Michael Watson who has DMD. He was diagnosed when he was 5 years old (late due to circumstances). He also had a large atrial hole in his heart and had open heart surgery to repair the hold in 2006.
He is 7 years old now and doing about the same as most boys at this stage. The Prednisone has caused weight issues, so it's beginning to become harder and harder for him to ambulate. He doesn't run or climb much anymore. He tries, however, and doesn't complain about his disease. It's rather a matter-of-fact status with him. It's quite remarkable.
We are lucky that Michael qualified for the PTC 124 trial study and he is in the process of preparing for the muscle biopsy and then 48 months of medication. As most know, the study is blind-blind so we don't know yet how the next two years will go.
Our extended families are in the Sacramento and Davis area. He is being treated by Dr. Craig McDonald at the University of California, Davis.
I developed the necklaces that are on the PPMD website shopping page. They have the simulated birth stone of the boy or girl affected and the last I heard PPMD made over $2000 so far. These necklaces are sterling silver and in the shape of the logo with either a sterling chain or a black strand which is popular too. I where them to bring attention to this disease as folks are always asking about them. All the women wear them in the family with Michael's birthstone (May 29).
I would like to have a blog also to bring awareness. We have been interviewed by our local channel with Michael and he has been in the newspaper. We were able to get the fire departments in Davis to bring back the "fill the boot" for MD which makes a little money for the cause.
I provide the pink hearts for PPMD at the local coffee shops.
I just retired so hope to finally have time to do more for the cause.
I will have to get a photo of myself for the profile and am sending a newer photo of Michael.
I am willing to share and discuss issues with anyone interested. I am not up to doing events quite yet, but hope to get back to doing those soon. Our concentration right now is with Michael and his sisters, Savannah 9 and Sierra 15. Both sisters are carriers of the gene and both my daughters are carriers. Mother of Michael will have no more children, but my youngest 28 will need to work through these decisions at some point. The younger girls know, but not at the age of discussion yet.
About my family:
I am married to the most wonderful supportive husband, Bob Associate Athletic Director at UCDavis.
I have two daughters 31 and 28. Our oldest has chosen not to raise her children, so their father and my exhusband and wife have adopted Savannah and Michael and take care of their daily needs, school, etc. Bob and I can only help with these duties as I am not well enough to take on the system again yet.. I was very involved in the beginning but the stress was too much. I am mending, but it's a life long process. I am also a carrier of DMD and have recently been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, malabsorption, Osteoarthristis,, Vit B and D deficiency and chronic pain. Interesting enough there are some women (10% +) who have some mild manifestations of MD at a much lesser degree and my weakness could also be a result of this disease. But I am doing a lot to stabilize my illnesses so that I can move forward and try to go back to involvement with PPMD.
To all those mothers & fathers, grandmothers and grandfathers, sisters & brothers, daughters & friends, aunts, uncles and friends. This is a terrible disease and heart-wrenching to watch. But these children are also so very special that it's hard not to be positive these days with the advances made, supported and tirelessly worked on by PPMD . They are incredible. There is no better place to be then right here fighting this disease as a team with doctors, nurses, PTC 124 trial experts, families, friends, and many more.
Hold your children everyday and know how special they are. We need to do all we can to fight this progressive disease.
Name(s) of child(ren)/individual(s) with Duchenne:
After the holidays would be great. I'm hoping to also meet up with some of the other local folks...it would be great to have something were we could all meet each other. Everyone's so busy, especially this time of year! You can email me at firstname.lastname@example.org or call me at (530) 848-4991, any time.
I also work on campus, so I'm pretty much "local" all the time.
My family & I also live (and work) in Davis. It sounds like you are such wonderful, involved grandparents to your grandchildren! I would love to meet you, sometime. My son, Joseph, just turned 13 and was diagnosed 7 years ago. He also sees Dr. MacDonald in Sacramento.
Hi Cathie. I am still trying to figure out this DMD website. Thank you for your reply, as I am so anxious to have others to communicate with. It sounds like you have more than your plate full with your own health issues and all. As my daughter said to me, as much as I am there for them, it would be great for me to have other grandparents to talk to, and she is so right. I don't know where to begin. I am so blessed in so many ways, but that doesn't stop me from being so sad and so angry about "my boys". It's a struggle, as you well know, and i welcome a friend to 'talk' to. take good care of yourself! laurie from new hamp[shire
I just read your note to all us carrier moms, and wanted to give you a better understanding of CPK for us moms. I have talked to my friend, a research scientist (PH'D)at UCLA for DMD. She is brilliant. Even though us carrier moms have a normal CPK (most often, than not), we can still manifest symptoms in 10-15% of us. In talking to a Neurologist last year at an MDA Summer Camp, we have to have a test for our two X's (since hat is why we are usually protected as we have the extra X where our boys do not. We are X X and they are X Y. If one of our X's is no good, that is where the symptoms come in. Regardless, we must have an echo every 3 - 5 years. Hope this helps some. Thank you for your post. I am so glad to have you here at PPMD Community. You are a blessing.
Hello Cathy, Welcome to PPMD;
Your grandson is a sweetie- you are a lucky Grama!
See my page for my story- as my son is nearl;y 32 yrs old.
I am very interested in your weakness and diagnosis as my sister (who is also a carrier) has had some sudden increasing symptoms that need to be diagnosed. Also how did you find and use the Global page on your site?
Thank you for being a supportive and involved Grandma. Every child with DMD should have one of you in their corner!
In health and happiness,
Rebecca in Berkeley
mom to Milo, 8 w/DMD, and Jules, almost 5, w/out