'I am not really sure why I joined this page, other than to possibly be of assistance to those of you who have children with Duchenne. I did have 2 sons with it, and they lived very active lifestyles…

'I am not really sure why I joined this page, other than to possibly be of assistance to those of you who have children with Duchenne. I did have 2 sons with it, and they lived very active lifestyles. They didn't concentrate on the things they couldn't do, they really didn't think it mattered. They did, however leave a huge impact on everyone they came in to contact with. The legacy they left behind from 20 years of life each is more than I will ever be able to accomplish, no matter how long I live. I am here for anyone with questions regarding Duchenne itself, the impact it has on family, the many stages that you as a parent will go through, and through the process of getting equipment. I work for a very reputable durable medical equipment company in Tulsa, and deal with wheelchairs, both power and manual, standing frames, bath equipment, walkers, and other equipment as well as fighting battles with insurance companies on a daily basis. Please contact me if I can help any of you in any way. I have been through every stage of Duchenne, from diagnosis to death and beyond.  There are so many questions I had that I have to learn myself, and so many fights I felt so alone in.  I would like you all to know that you are not alone, and those of us who have been there can help.

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Comment by Tammy Angel on March 9, 2011 at 7:45pm
I will try to help everyone that I can.  I know what I have been through, and if there is any way I can make anything easier for any of you or your children, that is my goal.  God bless each of you...
Comment by Veronica E. on March 8, 2011 at 12:14pm
I too thank you for being here and offering support and information.
Comment by Megan Knight on March 8, 2011 at 10:17am

Thank you so much for being here for all of us.  I will need your help.  That is why I started coming here bc there is no close support for me to go to.  I just want for my son to do so many things while possible that he wants and I am just not sure sometimes how to go about it. But I would like to come to you when I have questions.

 

Comment by Gerardine Gardezi on March 3, 2011 at 2:19pm
Thank you for your offer of advice and support.Deep condolences to you and your family -our family's journey is only beginning with my nephew.I would be honoured to avail of your help along the way.We live in Ireland but being here with everyone else distance feels irrelevant.One common goal lies here........to get through each day with a little help from sincere friends.
Comment by Linda on January 31, 2011 at 11:38am
What an incredible woman you are to still want to be there for all of us after what you and your family went through. Thank you so much for posting...you'll be hearing from me.
Comment by Ann Avery on January 26, 2011 at 9:08pm
Tammy, I am so sorry for your loss and know you can be such a help to other dmd parents. Bless you for checking in with those of us still going through this unwanted journey.

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