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Jessica Divin Female Yorkville, IL United States: Favorite

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Illinois FACES

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Coach to Cure MD

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Early Years (diagnois-ag…

174 members
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Illinois/Missouri Famili…

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Duchenne Parents

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Jessica Divin's Discussions

Zantac

Started this discussion. Last reply by amit gupta Feb 24, 2011. 12 Replies 0 Favorites

Hi everyone! We are having to start our son Ben on Zantac but I am unsure of when to give it to him. Is it only effective if given in the morning before breakfast and steriods? Would it work as…Continue

Deflazacort shipment

Started this discussion. Last reply by Ofelia Marin Jan 18, 2011. 13 Replies 0 Favorites

Has anyone has been waiting a long time for their Deflazacort shipment to arrive? Our order shipped on Dec. 3 but we have not received it! I was getting nervous and ended up calling Julie at…Continue

Deflazacort and weight gain

Started this discussion. Last reply by Donna Oct 28, 2010. 1 Reply 0 Favorites

Hi all. Have any of you have seen a big weight gain in the first year of taking Delflazacort? My son is 4 and has been on deflazacort for about 4 months now. Yesterday we were at our regular doc…Continue

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About me:: I am a stay at home mom of three wonderful children. My husband Andy and I have been married for 12 years and we now live in Yorkville, Illinois (about an hour outside of Chicago).

About my family:: Hannah 11 yrs, Ben 9yrs, Katie 5yrs. Ben was diagnosed with dmd in 2010.

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

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

City:: Yorkville, IL

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Comment Wall (7 comments)

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At 2:48pm on March 21, 2012, Betty Vertin said…: Hi Jessica,
My husband Jason did tell me he met another family with a 6 year old, but he couldn't remember your names, so I'm glad you followed up! We actually have 3 sons with DMD, Max, the one you met yesterday is the oldest. Then we have Rowen, 3 and Charlie, 14 months. Then we also have Lexi,10 and Chance, 4. We are pretty busy, but love having a big family.

I see you friended me on Facebook too, I look forward to getting to know you better!

Betty

At 1:33pm on March 1, 2011, Karen O. Burch said…: Hi Jessica,

Thank you for responding to my new member profile. I would like to talk with your mom. I think it would be nice to have a local connection to someone with a similar situation. Karen

At 12:22pm on February 28, 2011, Sharon Kippers said…: Thank you Jessica I just found ppmd. And it is a lifesaver. I have a friend who went out of her way to find resources for me. So thanks to her I found more support.

Sharon

At 7:13am on August 3, 2010, lisa burke said…: Thanks Jessica. I'm sorry you had a bad week. Hang on in there though, our sons are only little and I feel sure that effective treatment is coming. Am I correct in thinking that you need exon 51 skipped? If so, this is the same as for my little boy. Even if it only works to slow down the illness for a while, it buys us very valuable time for some of the other research projects top come to fruition.
Take care.

At 10:47pm on April 25, 2010, lynn weatherford said…: Your family is beautiful.....glad you had a laugh on my quote...laughing is important to have in our lives.

At 3:34pm on March 29, 2010, Michelle Gonzales said…: Jessica,

Yes I know the center!! Very close!

If you ever feel like emailing me outside of PPMD, my direct email address is garnet028@yahoo.com.
The families I spoke to when I first found out were Sophie Smitzel and her son is Logan. They live in Aurora. He will be 11 this year and she is very very involved with MDA. She also told me to go to PPMD website to get other answers. I first spoke to Chris Hyatt. Her son LIam is probably 8 or 9 this year and live in Sandwich I believe now. She and her husband are extremely funny and she was so very helpful to me when I had a ton of questions.

It would be great to meet with you and Ben. I know Nicolas would love to meet Ben.

It shouldn't take you too long to get in to see Dr. Wong. It wound up taking me only 3 months when I first found out. It's exhausting to go there for 2 day long visits, but I always feel like I'm accomplishing something by seeing her and her team. Plus, it becomes a mini vacation for us!!

At 1:58pm on March 25, 2010, Michelle Gonzales said…: Wow, that is close! I work in Oswego, and my son goes to Boulder Hill Elementary! First off, I am so sorry to hear about your son's diagnosis. One very good thing though is that he would totally qualify for the exon skipping trials. We see Dr. Wong in Cincinnati and she will be conducting the exon skipping for Prosensa. I have also put Nicolas on the list for the trials with Dr. Mendels study group for the AVI exon skipping trial. Dr. Mendel is one of the leading researchers for MDA and is in Columbus Ohio, so whichever trial comes first (AVI was supposed to start in March but has been put off for a bit) - we'll be there!!
It would be great to keep in touch with you since you are so close!! Have you spoken to any other families in the area? By the way, Ben is absolutely BEAUTIFUL!!