Hi Douglas, I can certainly relate to all of what you are feeling...sometimes I feel like a freaking animal I am so angry...I have so much i want to share with you, and i will, but as the "new normal" goes on the cat needs to see the vet, so i am on my way out the door, but i will write you soon. hang in there okay.
CureDuchenne is putting on the 3rd annual Link Up for the Cure golf tournament at Shadowglen in Manor this Saturday, May 2nd. Here's the link if you are interested in playing or if you know of anyone who may be interested.
Hi Douglas! My name is Debbie Dupree. Stefanie Killian mentioned that your son is a new diagnosis here in Texas. My son Ben, as 16 and learning to drive! I hope your trip to Cincinnati was a supportive and knowledgeable visit. I have been taking Ben to see Dr. Wong for 2 years now. We go back in July. Just wanted to introduce myself and let you know we are all here to support you!
I also forgot to mention ... you should contact guest services at the hospital. they can usually get you free / discounted admission to lots of attractions around town (I think they have free passes to the zoo which is really nice but very hilly, of course I'm from Illinois ...) and they can also give you info on discounted rates at lots of hotels. have a safe trip, i hope you'll update us when you get home.
Hi Douglas, by any chance, do you speak spanish? - (because of your last name) - I am Mexican.
Anyway, I know that you will be here in Cincinnati next week. We would love to meet you. We have a very good Zoo, an Aquarium, the Children's Museum (all of them are close to the Hospital). Here is my phone in case you want to call me (513) 765 9416. We will have a family coming from Roumania with a boy with Duchenne staying with us that week. They have a 5 yr old boy. We may be able to ahve dinner one day at home with them as well if you want. Let me know. Kind regards
We are pretty much in your backyard! We live around the corner from Cedar Valley Middle School in Round Rock. I am so sorry to hear about Eric's diagnosis, but you have definitely found the right place. Parent Project has done an amazing job of creating a community for families facing this diagnosis and of keeping us informed of the latest scientific advances.
We found out almost 4 years ago that our son Jordan has a deletion of exons 3-7. This particular mutation is considered an "outlier" which means he's somewhere between a typical Duchenne and a Becker, not that there really is a "typical" when it comes to this disorder. He'll be 14 next month and is still walking but needs help with long distances. I think I cried for a year after the diagnosis and everyone kept telling me it would get better...I am happy to say they were right. At the time I could not see how I would be able to enjoy life again, but now I appreciate every single day even more.
I hope you make plans to go to the conference in Atlanta- you will not regret it. It is the most comprehensive gathering of experts in the field...you will have the opportunity to actually meet with the doctors and researchers who are working so hard to find a cure and you will learn from other families who are fighting this battle with you. I'll be glad to answer any questions you may have or maybe we could get the families together sometime.
Our family is only 4 months into this journey. Our son, Brandon, who is 6 was just recently diagnosed. Surround yourself with positive people and hold on stronly to your faith. God has sustained us through these last few months and we praise Him daily for all of the encouraging news that is out there regarding treatments. Hope to see you at the conference this summer in Atlanta.
HI and Welcome,
I know these first few months seem unbearable, but in time it will become the new "normal". We found out in 2008 that i was a carrier and both of my boys have DMD. I take day, by day and hope and pray we find a cure.
My thoughts are with you during this tough time.
hugs, marian :)
I'm sorry you've had to join us, but so glad you found us. I'm Laurie, My 6yo, Sam, was diagnosed in 2005. He has a deletion of exon 50. I'm in the Houston area, but am originally from Temple (a little bit north of y'all). I'm actually going to be there this weekend. I remember well the beginning of our journey with DMD. Please let us know if you need anything, even if just a shoulder.