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Donna Female East Dubuque, IL United States: Favorite

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Premature Stop Codon

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He's getting ready to ask me "the" question.... I need help with answers

Started this discussion. Last reply by PPMD Jan 20, 2014. 6 Replies 2 Favorites

Deflazacort and Flex spending reimbursement

Started this discussion. Last reply by Donna Jan 3, 2014. 2 Replies 0 Favorites

Volley for a Cure MD - End Duchenne

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About me:: Mom to Erin, Joey, and Kyle and wife to my wonderful husband, Sean. We were high school sweethearts and our dreams all came true when we had our children. They are truly a blessing, even during these troubling times.

Name(s) of child(ren)/individual(s) with Duchenne:: Kyle

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City:: East Dubuque, IL

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We're new....Does it ever get easier???

Posted on August 27, 2008 at 9:02pm 8 Comments 0 Favorites

I copied this in from the other Parent Project message board and it was suggested I post here as well. So here it goes:

Hi,

Well, we're new to this game here. My son was diagnosed with DMD initially on April 21st (one week to the day of his 5th birthday). Official diagnosis confirmed based on genetic testing on June 10th - point mutation. We SIMPLY went to the doctor's for his kindergarten physical and through very casual conversation his nurse practicioner decided to run a… Continue

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At 11:55pm on September 23, 2012, Trinh Nguyen said…: Dear Donna,

Our boy got stop codon in exon 16. Ataluren is the research for this case, isn't it ? Can you tell me more about the trial your son is on.

Very much thanks.

Trinh

At 4:54am on September 2, 2011, Clare Harper said…: Donna gald to hear that,hopefully this is a drug if administered in time will maintain the boys ,and really slow the wasting down,thanks for getting back ,take care clare

At 10:03am on September 1, 2011, Clare Harper said…: Hi Donna,how do you think your son is doing since going back on the trial?thanks Clare

At 5:24pm on April 23, 2010, Fran Clavey said…: Hi Donna,
Thanks for reaching out and connecting with me. I'm terribly sorry about your son's diagnosis. I know how you feel. James was diagnosed a week after his 6th birthday...my world came crashing down....he just turned 9. He is doing well and is still walking. Loves to ride his bike and play with his 5 year old sister but tires easily because he does tooo much. Everyday is quite challenging both physically and mentally on all of us. Once a week he does water therapy and hippotherapy and once a month we see the PT. Please reach out whenever you need anything or just to talk. Please keep in touch.
Fran

At 12:36pm on February 12, 2010, Donna Gluck said…: Donna,
Thank for the heads up about the 2ND grader in your area. I only use words that the mother tells me to use. Some say sick muscles, Duchenne, MD, etc. I do not share any thing with the boys that their parent hasn't already told them. If you might pass my information along; I would welcome a call if they are intrested.I am very careful not to share any info with the boys. I need only one more participant to complete the data collecting! Thanks for your intrest Donna.
Donnag

At 6:07pm on February 9, 2010, Donna Gluck said…: Donna, The age group is 8-12. Darn it. What I ask the boys is to tell a story about what it is like to be them. And to name any emotions they have in the picture. im careful to ask before hand so I use the same language as the parent. If you know of any other moms of boys 8 to 12. Mind passing along my info?

At 5:49pm on February 9, 2010, Donna Gluck said…: Donna,
Thank you so much for your intrest. When can I come up? If you want I can email you information for participation. I can come to your home or meet in a local place. Such as a library.I have done both.Whatever the child and mom feel most comfortable with. I ask your sone to draw a picture and tellme a story about it. Average time is 1 hour. When would it be a good time for you? If on the weekend my husband and I can make an overnight of it. Thanks so much Donna!

At 2:32pm on December 5, 2009, baljit kaur said…: Hi Donna
We've just recieved the deflazacort in the mail today. Thanks for all your help on where to get it and who to contact.And yes the price is reasonable.I just hope he swallows the pills without complaining now!
Baljit

At 12:34pm on November 17, 2009, baljit kaur said…: Hi Donna
I'm just wondering where you get the deflazacort from.
Thanks for any info.
Baljit

At 9:19pm on September 14, 2009, Tracey Hartz said…: Hi Donna! Thanks for your comment on my page. We, like you, like so many people here, were totally floored by Seth's diagnosis, too. But we're getting through it. Seth has a point mutation, too-I know the 2b trial is closed, which is a little frustrating, but I was reading that they may be able to forego a third phase and submit 2b to the FDA? Fingers crossed! I hope your son (he is so cute!) is doing well on the PTC. Take care!