Thanks for the welcome Kari. A parent of 2 boys with DMD invited me to a PPMD conference a couple of years ago. The strength and hope of the room filled with parents, grandparents, and siblings was something I will never forget and the research being pushed forward was so inspiring.
I see that everyone here is like an extended family. My sister told me about this community and how it has already inspired her. She has just begun this journey and I am trying to stay by her side and the more I can "mingle" with this Muscular Dystrophy world, the more help I will be to her.... Thank you for welcoming me and my sister to this site.
Kari- thank you for welcoming me to this wonderful site. Jared looks so happy and vibrant. You and Stephen are doing a wonderful job and you seem so strong! I am taking strength in knowing that there is such a site as this and people such as you all. Angels to you and thank you again. Jean
We also knew that something was up with Sawyer earlier on. After in home therapy he unsteadily walked at 22 months. Once he started walking it seemed as though he made leaps and bounds. When Sawyer was 2, his sister Kennedy came into the world and we sorta took a break form therapy just to see if all he needed was that small boost and then he would "take off" like his peers. Just before he turned three we decided that our home program wasn't enough. It seem to us that our Doc was putting us on the back burner, telling us that "he'll progress at his own pace". We didn't believe it so we got a second opinion. My husband was just getting off his feet in helping his family start a new Bistro in Hudson WI so our insurance at that time was unbelievably expensive so we by passed seeing a Pediatric neurologist and enrolled him in a Special Children's Center for PT and OT. In Jan 08 our new insurance kick in and we knew that we needed to have him seen. Having mothers intuition, I knew in my heart that something was wrong but didn't want to face up to anything. I wanted so badly for life to be the way that I envisioned it -- marry my high school sweet heart, finish college, have kids, raise them, they would be successful like my hubby and I, travel the world with my hubby and love our grand-kids. So dragging my feet we took him to Gillette's in late Aug. I thought Sawyer had CP. We weren't with the ped. neurologist for 10 min. when he said "I think it's MD". WHAT! not our son he is built like a football player. The CK came back over 22,000. We found out on August 26 -- the day that forever changed our lives. Two weeks later we seen Dr. Day at Gillette's and had some genetic testing done. Mon. Oct. 20th they called to tell us it was MD. It is so great that I can connect with other parents that now or have been on the same roller coaster as I'm currently riding. I know we'll write again -- thanks for listen to me.
In disbelief- Brenna
Thank you for your welcome, Kari. We are all in this together and it means so muc for everyone to have a place to converge. Just browsed your site and you take amazing pictures! What a talent! God Bless you and your son...
Thank you Kari..I have faith and know there will be a breakthru for these boys in the very near future..We just have to keep making the public aware of the severity of this disease and what it is all about...
Thanks a lot for your message, Kari. I'll be talking to adolescents with DMD and their parents for a research study over the next 18 months or so and would be happy to stay in touch with you or anyone else who is interested to learn more about this project.
Hey Kari, thanks for your warm welcome. I am glad I can talk to others going through the same thing as me and my family. I sure hope that this is the place where I can find help for my parents as I have been unsuccessful otherwise. Jared seems full of energy, savor those moments. Thanks again and have a great day!!