Obviously I got your message a bit late on the support meeting today. We have not really found the meetings something we are able to make it to yet. It is so far away from Shakopee to be that early in the morning and we would have to find a baby sitter for our daughter. I have spoken a couple time with Kelley to ask why they can't offer sibling care as an option. That was available in the past at support groups and was a big help. We would love to get together with you all some other time though, with kids or without. We try to do things with Jack and Terry Kirley also, You met Terry with us at the previous MDA meeting and they may have been at the meetings today. We could certainly include them in any get together if you would like.
I hope you are all doing well! I look forward to connecting with you and Anneke again!
I am new to this site as I am from the UK.
I am mom to George, age 5, with DMD. I have some amazing friends who are cycling 20,000 miles for Duchenne. Starting in Halifax and cycling via Augusta and Rochester, Buffalo, Chicago, Mineapolis...Vancouver down to SF, LA and then all the way down to Argentina.
Please join the group "Cycle the Americas". I think they will be cycling near you - if are interested in finding out more or meeting them on their journey (they really want to meet local communities and DMD families) please get in touch.
I spend every spare second campaigning for research and awareness of DMD - would be great to have you on board with this adventure!
Hi Tapio! My husband Frank and I met you and your wife at the MDA presentation at the Shriner's Hospital a few months ago. I added her as a friend here also. I'm happy to see you here also. My husband has asked about you a few times to see if I knew how you were doing. It's affects dad's so differently than us mom's at times. We would love to get together some time with the two of you, but if you would like to have "man/dad talk" anytime my husband's email is firstname.lastname@example.org he would welcome any contact from you. He doesn't really do to much on here, doesn't even have his own account. Take care and I hope you are all staying healthy! God Bless!
I am sorry to hear about Jack's diagnosis. The emotions you must be feeling are also still so raw in my mind. Since we are unable to (somewhat) control our sons' destinies, all we can do is fight! My husband and I are not going to go down without a fight - our guns are blazing and we will do whatever it takes to find a cure. This especially has been the way my husband has coped with the news of DMD finding its way into our lives. He cries and he fights. He spends many hours on the computer and the phone, trying to get financial support off corporations, friends, and friends of friends to fund research into finding a cure. If we all did this, we might be that much closer to saving our sons!
Tapio, we are all here for you and for your family. Many of us have been here for years, so if you need advice or a shoulder to cry on, you are in good company.