My name is Emily. I am 34 years old and live in Madison, Mississippi. I have lived in Birmingham my whole life, except for 4 years in college at Ole Miss where I met my husband. We just recently moved from Birmingham to Madison, Mississippi. We have been married for 12 years. We have the most amazing 3 children, including our son, Beau, who was diagnosed with DMD in November of 2007.
About my family:
I am married to my wonderful husband, Paul. We have 3 children. Mary Addison is 8 years old. She is our little artist. Beau is 5 1/2 years old and has DMD. He loves anything on wheels. Amelia is 4 1/2 years old. She loves art and to play dress up. Our kids are growing up so fast!
Name(s) of child(ren)/individual(s) with Duchenne:
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?
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! :-)
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!
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.
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.
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.
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!