Emily's Comments

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At 10:01am on September 22, 2012, Moein said…


My son who is 7 years hates reading and school.He is smart out of school and when you talk to him you will never expect that he has learning delay!he is too slow in writing and spelling,bad at Math.His attention improved,but he is still struglling

Please,anybody who experienced this with his/her DMD son?

Can those learning difficulties be overcome within the time?

I really need your feedback.

Thank you very much

At 8:44pm on March 16, 2011, J's mom said…
Hi Emily!!! I am SO incredibly sorry I haven't gotten in touch! I've thought about you so many times and how I would love to compare notes as our guys do sound so similar! I would love to talk! Could you send me your # and let me know a good time to call? Look forward to talking soon! :-)
At 4:47pm on March 13, 2011, kimmy watters said…
 hi emily i just love looking at your pictures of your kids they are so beautiful how are you  coping today. how is school going for them.  kimmy watters
At 12:31pm on October 8, 2010, J's mom said…
Hi Emily!
It's a small world. Our good friends and neighbors, Robert and Ashley Perry, saw your fundraising page from the last PPMD newsletter and said they went to school with you. They are wonderful people and have been major supporters of our fight against Duchenne! Robert has been our race director for a run we put on every year to raise funds for PPMD. They said to tell you hello!

Your family is beautiful! Beau is close in age to my son, Jake, who has DMD. Jake's six. Is Beau in kindergarten? I hope it's going well if so. Jake just started kindergarten this year, so it's been quite an adjustment, but definitely a positive one!

Perhaps we will meet at the PPMD conference one day. I didn't get to go this past summer, so I am hoping to make it to the 2011 one. Take care!
At 12:37am on April 17, 2010, lynn weatherford said…
Yes, he is dyslexia....he has auditory dyslexia and visual dyslexia....we had time until he could learn to compensate. School was definetely a journey....I remember at dr. hixon did a research with the parent in parent project years ago. i believe dake was around 8 or 9 years old. it seems some of the dmd boys have some cognitive delays and the majority were visual learners. We did all kind of tricks to help our son but it was a lot of trial and error. Prior to entering kindergarten he was not interested in learning how to even write his name....reading was very difficult because he did not hear the phonic sounds until he was about 9 and did not rely on them to learn to read. he learned his alphabet thru sign language.....he does no have a hearing problem but seeing and feeling the letters did wonders. Color played a major part in his learning. he could learn spelling words in color but not in black and whiite. some things we figured out made logical sense but lots of it did not. I will not bore you other details unless you feel it might help you with beau someday. We were never told any possiblitliy of autism but I feel we might have if he was beau's age now....We were told "he was not retarded."..which never crossed our minds if anything we wondered of his giftedness. As you can imagine this was not a great day. He thought so ddfferent ly and procesed things differently but once i figured our his comunication skills I was constantly in awe.
At 4:17pm on April 16, 2010, lynn weatherford said…
I lost my first message because I am new to this site...so if you get my message twice you will know why.lol We travel to B'ham now and then. My daughter is on a gymnastic team and we come through there mostly with it.....We currently do not have a doctor in bham but have been there in many years past. I am so glad to find another family close by. Your son really reminds me of my son at that age ...especially the blonde and blue eyes..so precious....your daughters are equally precous. how are they handling everything? Tell me about the symptoms of your son's autism.
At 9:41am on September 21, 2009, Rachel Poysky said…
Yes. She sent me a message on FB. How old is your son? My son Joel turns 7 next Saturday.
At 6:47am on February 23, 2009, Windy Jackerson said…
Thank you for your kind words. At first I gave up faith and questioned "God" at all. I feel different now. The day is coming where our boys will have the chance!! Your little ones are adorable. What an amazing looking family. Yes, I am an Alabama fan. ROLL TIDE all the way. I am from Alabama.
At 3:38pm on February 20, 2009, Windy Jackerson said…
Hi Emily. Your son is beautiful. My son was diagnosed this past September with DMD. Things are hetting better. I would love to chat with you and say ROLL TIDE!!
At 6:51am on February 19, 2009, Michelle Diamond said…
Emily, yes we had been told that many times. Yet, Miller still walks at 13. So I really dont know what role that will play with your son. So what steriod did you choose. What kind of supplements?
Will you be attending the PPMD conference this year? I'd love to sit and chat!
At 6:24am on January 31, 2009, Stephanie Fielder said…
No, we haven't seen her, but I've heard alot of people talk about her. He wasn't walking at 18 months, had the blood test done and it came back positive. I've just recently found out that I'm the carrier, and it's been so hard on me and my family. I feel like I'm losing my mind half the time. My husband works 12 hr days, so I'm with my son most of the time by myself. It seems like as the days go by me and my husband get further apart. I am trying to rely on God mostly, but some days it's so hard to do. I work part of a church that has been wonderful for me and my family. Oh, we are going to MDA clinic Feb. 18th at 9:30. Please call me to sometime...334-730-3224
At 6:22pm on January 25, 2009, Alisha Ballew said…
Hi Emily,
I'm sorry you have to deal with UC yourself; I never realized how mean and nasty it really is! He started with having blood in his stool back in March of 2008. He gradually got worse, until they did a colonoscopy to find out what it was. He actually had to have two blood transfusions. He is on Remicade and doing pretty good; although the diarrhea never went away. It is control to a certain degree, but not totally. He was diagnosed at 11 years old.

One good thing for you to consider is that there is no link between DMD and UC. There are no histories of children developing UC and it having any relation to it. So hopefully you are safe. It was a long hard road before his diagnosis.
At 5:45pm on January 21, 2009, Michelle Diamond said…
Hi Emily,
I have heard many different things. I was once told the earlier the deletion the longer they walk and have less complications.
I do know a boy who is 19 and still walking, and he does have deletion somewhere 1-10.
On the other hand I have met alot of other boys my son included who have a later deletion, who still walk and have very few complications.
With all that said, I'm on the fence.
There are just to many outside factors for anyone to know for sure.
If you ever find clinical evidence please fill me in, I just dont think there is any out there.
Good luck on your Doctor's visit, I know the travel is long but it's so worth it!
Little tip, when Miller was younger and I traveled to Canada I used to take his wagon to the airport. It made life so much easier, and they have to let you take it to the gate, and they bring it to you when you get off the plane!
At 3:28am on January 1, 2009, Stephanie Fielder said…
Hi Emily, My name is Stephanie. I live in Millbrook, AL just outside of Montgomery. My son just diagonsed in July of this year. I'm new to all of this. How have you dealt with knowing your son has DMD?
At 2:00pm on November 13, 2008, Leslie Guzman said…
Hi Emily, we've been with Dr. Wong for more than two years. My son was diagnosed when he was 15 months. I live 15 min from the Children's Hospital. Give me a call when you feel convenient for you. My phone: 513 765 9416.
At 6:59am on November 13, 2008, Benjamin Dellay said…
My sone Jason has a splice Mutation between exon 50 and 51. The doctors explained what that meant but I would need another 4 years of college to understand what they were talking about. Hope to see you there.
At 10:24pm on November 7, 2008, Leslie Guzman said…
Me again Emily, my sons deletion is 48-52, different than Beau's deletion but needs Exon Skipping 53 as well...
At 2:15pm on November 7, 2008, Leslie Guzman said…
Hi Emily!, my son is turning 4 in January. I have 3 sons as well. The other two are 2 1/2 and 4 months. We would love to host your family during your stay. I love the idea of our boys creating nice friendships among our community. For your son it can be a nicer experience. Take Care, Leslie
At 8:27pm on November 3, 2008, Benjamin Dellay said…
My family will be seeing Dr. Wong in January on the 27 - 29. Are you going to be there during that time.

At 4:29pm on October 22, 2008, Michael A. Papp said…
Hello Emily,

Trying to get caught up with e-mails. You have a beautiful family. My little boy is a lttle ove r 2 1/2. At times it is still difficult to deal with but this site has helped. We are expecting a little girl in Decemember. We found out that we were pregnant about the same time we found out the news about Michael. That story is for another time. I hope for all our boys that time is on there side. Talk to you soon. Sorry so short trying to complete nursery without my little helper.............Michael

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