Amy Wickert
  • Female
  • Rochester, MN
  • United States
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Amy Wickert's Discussions

Manifesting Carriers

Started this discussion. Last reply by Kathi Kinnett Sep 19, 2012. 3 Replies

Family Reunion- located on top of a hill

Started this discussion. Last reply by Liisa Underwood May 19, 2009. 2 Replies

Night Splints

Started this discussion. Last reply by Jennifer Shumsky Jan 30, 2009. 8 Replies

 

Amy Wickert's Page

Profile Information

About me:
I have 2 sons, Alec is 6 and Joseph is 9. Alec was diagnosed with dmd right before his 3rd birthday.
About my family:
Jeff, Amy, Joe and Alec. I do daycare at home with a part-time helper. Alec goes to afternoon kindergarten. Joe is in third grade. We love the outdoors, camping, and going to the gym to play and swim.
Name(s) of child(ren)/individual(s) with Duchenne:
Alec
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Rochester, MN

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Comment Wall (27 comments)

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At 6:19pm on March 10, 2009, christine good said…
Thanks for asking. I haven't heard back yet.
At 6:36pm on February 5, 2009, christine good said…
Amy,
I got a letter from my sons Dr. for insurance payment of Deflaz. Where did you send your letter? To the claims Dept?

Thanks,

Christine
At 2:42am on January 23, 2009, MicahsDaddy said…
Hi Amy,

Alec would need either 44 or 46 skipped. In frame and out of frame confuse me. I thought I had it figured out, but every time I think I do, I am wrong...so I gave up on that. Some people think it is the difference between BMD and DMD, with In Frame being BMD, but I have seen somewhere (I think the Utah database) that In Frame patients can have DMD...so who knows.

As for exon 45, it should be included as one of the first 6 exons to be tested in exon skipping. Currently, they are testing for 51 and 50 is right around the corner, if it hasn't already started. One of the organizational leaders of a different non profit has a son with our same deletion and they mentioned to me that what we need tested is right around the corner...so hopefully it is next.

My thoughts on exon skipping are not like other parents. I am very skeptical about it. All it does is change DMD to BMD, so still an MD. There are cases of BMD that are just as rapid as DMD, so who is to say that for each kid who receives exon skipping that they will live to 40, 50, or longer? My gut tells me there may be instances that even when changed to BMD, it could still be a fast progression.

I do think that since there are no potential cures in the pipeline, exon skipping mixed with other potential treatments will be the way to go. But, we need all these potential treatments to work. Utrophin upregulation, BBIC, and exon skipping may be the combo that will help slow down progression to help with longer lives...but all 3 are potential, so we must wait.

Your son and mine are right on that border where they may or may not be helped by a treatment. I feel positive with the work that is going on today. Will something come in time before they stop walking? I dunno? But I feel pretty strongly that something will come in time that they won’t have the complications we hear of in boys today who are in their later teens…and I feel that they will have a much longer life as well.

Just keep up hope and always stay positive.

Take care,
Christian
At 3:22pm on January 14, 2009, MicahsDaddy said…
Hi Amy,

Sorry for the super uber late response. Did you still need information on exon skipping? If, so, how much would you like to know?

Hope all is well,
Christian
At 9:41pm on December 31, 2008, Darcy Tumminello said…
Amy,

I believe you mentioned a month of so ago that you were able to get your insurance company to pay for calcort?? Would you be able to share how you won this battle and how you wrote the letter?

Thanks
Darcy
Christians Mom
At 9:41am on December 16, 2008, Nabeel Ahmed said…
Hi, Amy Wickert thanks for medicine name, have you seen any change in Alec after Iron medicine,
is he goes to school?
At 8:10am on December 15, 2008, Nabeel Ahmed said…
Hello, My name is Mehboob Ahmed from karachi Pakistan, I have a son Nabeel Ahmed 15 years, he was dignosed at 10, what about your another son joe,
can you give me name of medicine which you give to Alec as Iron.what he use for walking and climbing stairs.
At 10:07pm on December 14, 2008, djamel fathi said…
I mean he takes his time to sleep he goes to bed betwen 10pm-11:30pm wake up at 7:30am.
At 10:00pm on December 14, 2008, djamel fathi said…
He play on the computer or read a book,,,
Then he goes to the bed around 10pm to 11:30pm
The next morning have hard time to get up,but after having his breakfast ,it's a nother day,,,
My son isn't under any medication till today,I been very upset with his neurologist,we looking forward to go to chophiladelphia.
At 9:54pm on December 14, 2008, djamel fathi said…
Hi,my son have problem going up stairs,running,some speech problem,but THANK GOD he is very active,don;t get tired : I mean he goes school at 8am get out at 2:30pm,then walk to the rec center with friends,get out at 5pm ,came home ;eat,do his home work,play then around 7pm we go to the swimming pool for 90mns,after we get home you will think he is exhausted,NO
 
 
 

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