I only have one biological son whom has Duchenne's MD and is also 16. I would love to communicate more and get your thoughts on certain issues. I am in awe of your strength! I know that it's all thru God's love and grace that keeps us going. Stay strong and I hope to hear from you soon. God bless you and your family.
hi tanya thank you very much for added me as your friend, how are you doing today. how is the weather texas, i am on big misson not just to lose weight but to do the seattle half marathon with friends who will help me push me in my wheelchair and i be the most to raise the most money then the boys. not am bragging. kimmy you are always welocme to leave me a message. kimmy
hi tanya i am friend of mindy colby i just want to say i am sorry for loss. i truly have alot respect for you. i to have walking issue but i make wonderful day. puttting a posititve face even when i am in pain. i hope to hear f or soon.kimmy
Hi Tanya. Thanks for your message, I know that life is hectic, so no worries. Looking at your photo's you and your lovely family are such an inspiration to me. Emotionally and mentally it is a challenge for me at the moment but am sure I will get through it. I did not get to the conference this year, there is one in Sydney next year and I am definitely going to this one. Hope to learn more about your family and how you cope, you say you are all so strong, it looks like it too. Keep up the good work, you are an amazing mother and have an amazing husband too. Lots of love Jo
I just was reading on carrier Mom's and you were talking about your carrier daughter. I had a cousin that had DMD, but sadly passed away 20 years ago. We only found out about a year in a half ago that I am indeed a carrier, actually all of us in the family have been since my GrandMother come to find out. Anyway, I too found out that my daughter Isabella age 4 is also a carrier. I am currently pregnant with twins via PGD/IVF. We went through the process and had our embryos tested and only put back the healthy ones. I would absolutely encourage her that she can have children who are unaffected by this disease. I wish when I had my son Gavin 3 and my daughter I would have first known I was a carrier and then knew about PGD/IVF. I know people can be so ignorant and judging and I just though I would share my story. I hope your daughter feels very positive about having children and there are ways around this awful disease. I'm so sorry for what you and your family has been through!! Your dear son Christopher sounds like such an inspiration and to always be positive and want his family to feel positive is just such a blessing for what he went through. I hope my daughter will choose to have children because wow, I just can't imagine my life without knowing them, no matter what.
hi there, i noticed you have alot of experience with multiple boys with dmd... i have 2, max is 7, austin is 10. austin has always had many more severe symptoms than max, in fact austin was using a power scooter regulary by age 5, max still runs and jumps and climbs at age 7. i was wondering if you saw a difference in your boys' progression, and how you have delt with it. for example, max gets mad that austin doesnt have to do all the chores max has ( austin cant bend down to pick up toys, max can with no problem) and max also wants to be in his wheelchair all the time even for very short walks ( 5 feet, from our van to our house) he can walk just fine, we do have him in a chair for distance... also on the other side, austin wonders out loud why max doesnt fall, can run doesnt need a chair etc, when austin remembers being 7 and having a hard time. thanks for any advice you can give me, i dont want to seperate them, and treat them differently, but i also dont want to make max less able than he is.
Hi Tanya I have a question for you. Did you ever feel like sometimes your children with DMD were just burdon's because here lately I feel like that and it saddens me. He's a great little boy I couldn't live without him. I hate this disease not my child so I guess when I get mad I shouldn't blame him. He has behavioral issues at the moment he throw pop and milk and food all the time. I just don't know what to do anymore. I know that Damien is a blessing from God I deeply believe he is my angel. I guess sometimes we just need a break. I'm not understanding what I'm going through and I'm going to you for advice because you have experience. Thanks and hopefully this doesn't bother you. Amanda
Hi Tanya- so good to hear from you. We just got back from Mardi Gras in New Orleans. I grew up there and we lived there before moving to Austin about 8 years ago. Anyway, the kids had a blast and caught a ton of beads. Jordan was sad and quiet the first night because his dad had to carry him to and from the restaurant because it was such a long walk. He still refuses to get in a wheelchair. It's heartbreaking to watch him deal with his loss of function.
HELLO TANYA, I AM IMPRESSED MUCH YOUR HISTORY, OF WHERE EXTRACTIONS AS MUCH FORCE, FODDER THAT OF YOUR CHILDREN, MY SON JOSHUA IS 8 YEARS OLD WERE DIAGNOSED WITH DMD IN THE MONTH OF SEPTEMBER, DOES NOT COLLAPSE TO ME, WHEN ENCONTRE THIS PAGE AND I SEE ALL THE CASES, WHEN I SAW YOUR CASE IS MADE AN IMPRESSION, THANKS TO GOD OF SENDING TO YOUR CHILDREN A MOTHER LIKE YOUR, ESTAN YOUR BEAUTIFUL CHILDREN, WE WE LIVED IN MEXICO, MONTERREY, SOME TIMES WE GO TO THE USA, SCYTHES AND HOUSTON, ALSO, WE HAVE RELATIVES IN SCYTHES. NADAMAS I WANT DECIRTE, GOD BLESS YOU BY STRONG AND OPTIMISTIC AND THE GREAT THING THAT YOU ARE, A STRONG HUG TO YOUR CHILDREN, AND WHO ALWAYS BLESS THEM TO GOD. P.D. IT EXCUSES IF NOT THIS TRANSLATED GOOD EAST MESSAGE BECAUSE I DO NOT SPEAK ENGLISH, THANKS
Thank you for adding me as a friend. I thought I would just let you know, I visited your part of the world in 1985, my dad took me to Dallas and we stayed in Houston. I also got to see Galviston too, many years ago. Small world.
Speak to you soon. Love Jo