You sent me a message on my wall in July. I was thinking about you and thought I would drop a line. I was wondering how things with your grandson are going. He looks like a little cutey.... I would imagine he is still quite busy. I remember John running around. One of his favorite things at that age was dragging his beanbag chair to the kitchen table, climbing on the chair and then the table, standing up and jumping into the beanbag and starting over. It used to make me laugh and give me stress :) Take care.

Hello

Johnner was diagnosed just a little before he turned four. I remember the day. It felt like the life was taken from inside me. I was numb. I later learned that I was grieving as if I had lost someone. I had infact lost all the hopes and dreams that go with raising a child. My parents were devastated with the news also. It was particularly hard for my dad. He had two girls me and my sister....and he had all the boy hopes and dreams. I know this advise might sound unhelpful...but don't dwell on the DMD until the symptoms really start to manifest. Concentrate on the wonderful little boy you have in your life. At times when Johnner was little I would actually sort of forget he was "sick." We always concentrated on what we had today and knew that tomorrow wouldn't be like today. The time will come that you will not be able to forget and it will hit full force. Your grandson looks like a darling. Take care....keep in touch.

Hey Janet - If there are any other photos that you want me to upload just call or email me, oh and give Logan a hug and kiss from me!
Morgan

Sorry, I meant to say my mother was devastated to learn her perfect little grandson had DMD, not boy.

Janet, as a mother of a 4-year old with MD I know how you are feeling. My mother was devastated when we gave her the news that her perfect little boy had DMD. In fact, I think her recent battle with breast cancer was due to the grief and emotion that she held inside. My advice to you, be there for your daughter and her entire family. Don't single your grandson out from all your other grandchildren as this can lead to resentment with the others. Be the greatest grandmother you can to all your grandchildren and live each day to the fullest. Tell them all the time how much you love them, and tell your daughter as well. Remind your daughter what an amazing mother she is, as she needs your support more than anyone else. Her husband does too. It is hard, as the father of a boy with MD, to suddenly have all those dreams a father has for his son shattered in many ways, so remember that he needs just as much support as the mother. It sounds like you are such an amazing mother and grandmother, just being on this website shows how much so.

Janet,
I understand! I understand! I understand your pain! You do feel helpless! All I could think when my little Riley was diagnosed is that his mother (my daughter) has a Masters degree, I have a Masters degree, my mother is an R.N., Riley's father is a crime scene detective, and my husband can fix any and everything but none of us with all our knowledge and skills can fix Riley. We can, though, through the grace of God and union with others in our situation and family, work together to find a cure for these precious little boys. Riley was diagnosed on January 24, 2008 and I continue to cry because the pain and worry doesn't go away but I can live with that. What I cannot live without is hope and faith. I cannot live without support and resources that will help. Your best tool to help Logan is your tears, your faith, and your voice. Tell people about him, learn as much as you can about Duchenne's and tell people - knowledge is so powerful. Mankind is good and people will pull together to help as much as possible. Also, you have this wonderful network of people that will inform and support you. But, first, and far most place Logan in God's powerful hands. He will take care of him. If you feel you need to talk, I am here!

Marla Tabor

Janet,
A good place to start to set up appt. with Dr. Wong is with the Clinical Concierge 513-636-5151. Dr. Wong's contact info.

Dr. Wong 513-636-4222
brenda.wong@cchmc.org

From what my son & daughter-in-law have told me, she is well worth the trip to Cincy. Wishing you the very best. Anita

Hi Janet, as a parent who has lived with this knowledge for many years, I can advise you and your family one one main thing: Never give up, never lose hope...take care, Heidi