Douglas Sanchez's Comments

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At 8:12am on July 13, 2009, Marian Lamberson said…
p.s. we are in Canada, but my husband is an original Texan, Fort worth area...
At 8:11am on July 13, 2009, Marian Lamberson said…
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.
At 10:49am on July 2, 2009, Marian Lamberson said…
HI Doug, just wanted to drop a line and see how thigns were going. Last time you wrote, it was the initial push..wondering how things are going?
Take care!@!
At 9:06am on April 29, 2009, Donna Taylor said…
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.

http://linkupaustin09.eventbrite.com/

Donna
At 1:01pm on March 31, 2009, Julie Hathaway said…
So glad your visit was a success. Tell me about the nada chair for stretching. That is a new term for me. where do you get it? did dr. wong perscribe it? thanks. hope to see you all in atlanta.
At 9:54am on March 31, 2009, Donna Taylor said…
Hope you had a good visit in Cincinnati. They are an amazing group. Please call when you have time. We would love to get together with you guys. 248-2630.
Donna
At 10:54pm on March 30, 2009, Debbie Dupree said…
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!
At 9:28am on March 20, 2009, Kristin Hiatt said…
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.
At 11:14pm on March 19, 2009, Leslie Guzman said…
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
At 7:01pm on March 14, 2009, Angela said…
Thanks for sharing the pictures, your kids are darling!!!
Ang :)
At 11:13am on March 14, 2009, Donna Taylor said…
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.

Donna
At 9:18pm on March 13, 2009, Julie Hathaway said…
Hello,
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.
At 8:25pm on March 13, 2009, Marian Lamberson said…
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 :)
At 7:48pm on March 13, 2009, Angela said…
Welcome to the family! Sorry you had to join us this way, but you found the right place. Please call on all of us to help you with this very difficult time!
Ang :)
At 4:27pm on March 13, 2009, Laurie Paschal said…
Hi Doug,

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.

Laurie
At 4:10pm on March 13, 2009, Stefanie Killian said…
Hey Doug,

Glad you found us. I'll send more friends your way. Please let me know if there is anything I can do.

Stefanie

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