Brenna Female Wisconsin United States: Favorite

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Dec 24, 2011

"Just getting back for Columbus Ohio, Sawyer may qualify for AVI's Exon 51 skipping. Anyone else out there being evaluated?"

Apr 8, 2011

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Mar 19, 2011

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Mar 15, 2011

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Jun 15, 2009

About me:: 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 two dogs, one guinea pig and 20 doves (Sawyer loves birds).

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

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At 11:01am on April 10, 2011, Karen flor said…: 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!!!

At 11:24pm on March 22, 2011, Candace Miller said…: 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 candmiller@live.com. 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.

At 1:17pm on March 16, 2011, Jeff Connolly said…: Hi Brenna,

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..

-Jeff

At 2:15am on October 14, 2009, Candace Miller said…: 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).

At 12:58am on June 13, 2009, Jennifer Shumsky said…: Hi Brenna,
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!

At 12:02pm on February 23, 2009, Penny Pratt said…: 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

At 3:30pm on December 9, 2008, Amy Wickert said…: HI Brenna, just checking in with you to see how the vacation went. Hope you had a great time. How did Sawyer's dr visit go??

At 2:55pm on November 14, 2008, Jennifer Shumsky said…: I didn't get a chance to email you, but I hope your visit went well yesterday. We definately need to get together soon!

At 8:07am on November 12, 2008, Amy Wickert said…: HI Brenna, Just thinking about you today. Hope you have a good visit with the Dr today. Well, you know what I mean. I hope you like him and hope he answers all of your questions. I hope you walk away with a good feeling about your Dr. Have a great time on your vacation. We went on vacation shortly after our diagnosis also. I tried to just focus on the present and not the future. Just think about today. Take Care, AMY

At 4:18pm on November 8, 2008, Jessica Florkowski said…: I know how you feel, we are not having anymore children either. It is really suprising how many parents are nurses. Patrick was 2 when he was diagnosed and he will be turning six in January. We are having some behavior issues right now and I am looking into changing from Prednisone to Deflazocort(hopefully less side effects). Take care.