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Comment by jenn on May 15, 2009 at 7:45pm
hi it is my mother laurie that commented below, somhow when she logs on everything she does comes up as mine... not sure why yet, she does have a page i set up for her, her name is laurie and her pic is my son austin on his grampas tractor, thanks, jenn
Comment by jenn on May 15, 2009 at 5:53pm
I have two grandsons with DMD. Austin is 10, and Max is 7 Austin was diagnosed when he was 3, and Max as a newvborn because of Austin's diagnosis. That means that I have had 7 years to deal with this, and I am sorry to say, but it doesn't get easier. Austin is progressing just the way we were told that he would in terms of his mobility. Max less so with the external issues, more so with the internal muscles and concerns. I am very lucky to live neaar them and be able to see them whenever I want. My daughter, Jenn, and their stepdad, Craig, are incredible. They are so attuned and so proactive with the boys' health, and their needs medically, educationally and emotionally. But, it seems to be a constant battle to advocate for what they need. When I feel sad (daily) I focus on their abilities as opposed to their disabilities. They have intersts just like other kids their age. We expose them to as many opportunities as we can, and are constantly educating people about DMD. This is my first day on this site. I'm not great with tech stuff, so my daughter set it up for me so that I would have a peer support network. As much as I have loving friends and family...who can really understand if you are not there? I thin that it is so important to find a balance in life in terms of being a grandparent who is there at the drop of a hat, and having other outlets for the sadness and, yes, for me, anger, that sometimes happens. Is ther anyone out there who is from my area...New hampshire? I could use a friend! laurie
Comment by Teresa Tommasetti on March 30, 2009 at 5:16pm
I wanted to let you all know that my grandchildren had a spinal fusion surgery and are both doing real well.. It was a hard decision fo rmy daughter and son in law to make, but they did make the right decision and the boys are recuperating now , but doing very well....Teresa
Comment by Cathie Bullis on February 18, 2009 at 8:32pm
This is definitely the hardest thing I have had to do in my lifetime. Our grandson, Michael is 7 years old. He was diagnosed two years ago. He is one of the boys involved in the PTC 124 study but since it's a blind-blind study, we don't know if he is getting the placebo or not.

I feel they are getting much closer to a cure, with much thanks to PPMD.
Comment by Joanne Haswell on February 6, 2009 at 4:45pm
I am Joanne-Lukey's grandma. Lukey will be 7 next month and was diagnosed in 2007. We go to Dr. Wong yearly and Dr. Tseng at MGH in Boston in between. We cry but we hope and pray for a treatment which is so close to help this generation of boys.We are a close family and Pat Furlong is right when she says that grandparents have their child and their grandchild to feel and care about. Grandpa and I love Lukey and his sister and Mom and Dad more than life and believe that we do have hope.
Comment by Teresa Tommasetti on February 5, 2009 at 1:50pm
It gets harder to cope day by day and in my effort to be strong, I find myself sinking deeper into depression. We have just been advised by their doctor that they need surgery on their spine, I would like to know if any of your grandchildren have gone thru the surgery and what we can do to prepare for it, pre-op and post op.
Thank you for giving me a chance to express myself and for your support
Comment by Peggy on February 2, 2009 at 8:25pm
I'm not sure how much support I can give you because my journey has just begun. My grandson is 2 1/2 years old now and I just love him so much. I guess I just can't believe that one day he will be confined to a wheelchair and will not to be able to help himself. All I can say when that day comes, I hope I will be around to give my daughter and her great husband the help they will need. This site will probably become your best friend. I know it has helped my daughter and she has met some great people on this site. Believe me your daughter does know how much you love her and your grandchildren. Just hang in there, God does not give us more than we can handle.
Comment by Teresa Tommasetti on February 2, 2009 at 3:56pm
Hi, My name is Teres and my grandsons Steven and Kevin were diagonised with MD, both boys are in a wheelchair and the disease is progressing and so many decisions have to be made, I want to be strong for my daughter and son in law,but at the present time I am having diffuculty coping, I feel so inadequate and want to make sure, that they know how much I love them and will be there to give them my love and support...I have not joined any support group yet, but I feel that it is time, and would like to know if I can find a support group in the San Fernando Valley, California...
Comment by barbara stringer on October 6, 2008 at 10:16pm
Hi, my name is Barbara, and my grandson Skyler was diagnosed this year just short of his 5th birthday. My son is a divorced dad with an 8 year old daughter as well, living far away from me in Vancouver. He is getting wonderful guidance and help from the professionals in Vancouver, and has attended an amazing conference this past weekend with doctors from all over the world, as well as raising money through a walk for MD a few weeks ago. He gains so much strength from everyone at the hospital in Vancouver that he talks with. After the initial shock of it all, this has been a great help for him. He too has a difficult road ahead because I'm sure it would be easier with both parents working together as a team and support for each other. We must take each day at a time, and hopefully my son will be able to cope with the great demands little Skyler's illness will place on him. I will do all that I can, as long as I am able to do so. I love them all very much.
Living in Toronto.
Comment by Peggy on September 29, 2008 at 7:43pm
Hi my name is Peggy and my grandson Wyatt was diagnosed with DMD Oct 31, 2007 . He was 14 months old when my daughter and her husband got the news. Wyatt is now 2 years old and we just came back from see ing Dr. Wong. My daughter was very satisfied with the appointment as she had already went to the Texas children and decided she needed to do more. Everyone she spoke with told her about Dr. Wong so off we went. So now I only take one day at a time and enjoy every minute I have with my special grandson.

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