I'm an surgical nurse in a rural hosp. in WI. I enjoy quiet time with my hubby, he is my best friend. I like those far and few between times when you sit down for half an hour and watch senseless TV. I'm a scrapbooker and make sure to get to one weekend retreat every year. My family is my life!
About my family:
Wes and I are highschool sweethearts and got married in 2001. We did a lot of living before we settled down to have kids. Sawyer was born two days after Christmas in 2003. He had to darkest eyes and a crop of hair a farmer could of been jealous of. Sawyer was diagnosed with DMD in Oct. 08'. Kennedy was born in Jan. 06. She decided to come early and she hasn't stopped yet. To complete our story we have one dogs and two hamsters.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Why are there so many days when I wish that I knew more and the other days I wish we had never known? 5-16-09
Feeling like we won the lotto, Sawyer is eligible for exon skipping 3-09-11
Hi Brenna, Lucky indeed!!! I am so hopeful for this trial. Danny needs 45 which is on there short list! How is Sawyer doing? We are about 5 hours from each other :( Maybe we can meet up at some point when we are camping or something, then we will go a little further into Northern WI. I would love to meet and hang out! My son is 6 (7 in August) and we don't know or I should say have any friends close enough! Hope all is well and am very anxious to hear about your experience with the trial :)
Hi Brenna....my name is Karen and we will be taking our son Lucas on the 26th of this month to Columbus for his evaluation for the AVI study. How was your experience???? When I spoke to Dr. Mendel last month,he still didnt have many of the details. I hope this is what we've been praying for, for all our boys!!! Will touch base after our visit!!!
Hello Brenna. We have Ethan (our 1 year old) enrolled in a research study at the hospital in Minneapolis for DMD boys 3 and under. Joseph is not enrolled in any clinical trials. Exon 51 wouldn't work for him. He and his brother have the deletion 45-50. I believe the only exon skipping that will work for them is exon 44 so unfortunately we wouldn't even be eligible for any exon 51 trials. Sorry!! Please feel free to contact me anytime! We will be coming up to Minneapolis on May 6th for Ethan's research study. We as in Ethan and I as his brother has school. I hope the MDA office gave you my e-mail and phone number. If not my e-mail is firstname.lastname@example.org. I have instructed the Madison office to give my info out to any families that ask so hopefully they have been. Talk to you soon.
Unfortunately, we have not participated in any clinical trials to date. Cullen is scheduled to visit Dr. Day at the U of M next week for screening for possible future trials with non-ambulatory boys. I'd like to hear more about the exon skipping trial Sawyer is taking part of. What is his deletion range? We have a daughter in school in Mpls. so we travel through your area often...It would be nice to meet you and your family sometime..
Hello...my name is Candace Miller. I have a 4 year old diagnosed with DMD in July and I am also 22 wks pregnant with another boy (just found out yesterday). I saw you were from WI so I thought I would drop a note and say hello. I live near Madison and have been searching for anyone nearby (WI or any neighboring states).
I heard you got to meet Xavier and my Sister in Law at camp yesterday. Suzie said that Sawyer is quite a cutie! Xavier had an absolutely awesome time at camp. He is quite unhappy he had to come home. I hope things are going well with you. Our next 6 weeks are crazy but after that I would still love to try to get together sometime!
Hi Brenna, I have a son who is now 17 years old with duchenne and he to was diagnosed at that age of 6. His father and me did decide to put Dillon on steroids as soon as we found out (deflazacort) and I have no regrets on doing this. This enabled him to walk longer than other children we know. He did not go into his wheelchair until he was 12 years old and I am thankful for that. He just recently went through back surgery which is alot later than most kids with duchennes. I hope that this helps you out if you have any questions please do not hesitate to contact me. Penny