I am curious to hear from this group how your son is doing - including what their mutation is; what age and any thing that they are struggling with.  Our son Will - he is now 10 1/2 years old and we are seeing a very slight decrease in his ability to do stairs.  He is walking fine but probably tires after what a non DMD boy wouldn't.  He mentioned that getting up from the floor is hard. If anyone is doing any unique therapies = pls note that too. Thanks Char Burke

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Joshua will be 10 in a couple months and has duplication 8-24.  We just went to his bi-annual appointment and his specialist feels he's getting stronger.  He's just an average kid who's shorter than average.  As for therapies, we all eat a real food diet which is high in protein and low in starch, we practice Reiki, and Joshua takes a multitude of supplements.

Well, my son is 11 1/2 and he has been wheelchair bound for over two years now. He cannot walk nor stand. Healthwise he is doing pretty good. No respiratory nor heart issues so far. His arms have become weaker and finger dexterity too. But he is overall dealing with his daily challenges amazingly well He loves school, life in general. Note: He does not take any medication nor dietary supplements at all.

His duplication is from exons 8 to 12.

Hi Char

David has a duplication of axons 8 to 32.  He is almost 12 and is walking and doing most things for himself.  He has a lot of difficulty with stairs and getting up off the ground.  He uses a wheelchair to sit in at school and for longer distances.  He has no learning problems.  David is on Deflazacourt, ACE inhibitor and is enrolled in a drug trial at Ohio State.  We leave in 2 weeks for his "Wish Trip".  We are all very excited.  Merry Christmas to all.

Austin is 14 and has duplication of exons 53-60.  He quit walking when he was 11 and can't stand at all.  He started heart meds in August this year due to scarring and decreased heart function.  He has two physical therapists and and one Occupational Therapist that all come 2x a week.  

Austin takes Prednisone, two heart meds, vitamin D+3 & calcium, has ADHD and takes meds for that, he also takes Lexapro for the depression that all these meds cause.  

I have two son. One is 5 and 1/2, the other is 2 and 1/2. Both have the same duplication in exon 39 which leads to DMD. Both of them are fine for know. The elder one complains about ladders, can't run fast like other boys can. We are having steroids for the elder one. We take pills over day,first day 1, second none, third day 1,5, fourth none and so on. And elder one swims. That's all. Is anybody aware of a research project for duplications(except utrophyn)
Hope this helps.

If you look at the trial readiness discussion in this group - Sharon talks about many different research projects that could potentially help our boys.  

dietf said:

I have two son. One is 5 and 1/2, the other is 2 and 1/2. Both have the same duplication in exon 39 which leads to DMD. Both of them are fine for know. The elder one complains about ladders, can't run fast like other boys can. We are having steroids for the elder one. We take pills over day,first day 1, second none, third day 1,5, fourth none and so on. And elder one swims. That's all. Is anybody aware of a research project for duplications(except utrophyn)
Hope this helps.

Our son is just turned 2 years, he has duplication of exons 8 -13, he had normal development, started to walk in 15 months,

we can only notice pronounced and hard calf muscles and thighs but after three months using coenzime Q10 we noticed that his muscles become softer and now we are planning to switched on idebenone. It is very disappointing that there is little research regarding duplications. I wonder what can be our hope? Utrophyn?! I pray for it! Merry Cristmas to all and I hope that next year will bring us a miracle!

Best wishes!

Hi Jennifer,

I`m glad to hear that your son is good and independent at age 12.

can you tell me in which trial is your son enrolled? is it that trial specific for duplication?

Thanks in advance,

Marija

Jennifer Kember said:

Hi Char

David has a duplication of axons 8 to 32.  He is almost 12 and is walking and doing most things for himself.  He has a lot of difficulty with stairs and getting up off the ground.  He uses a wheelchair to sit in at school and for longer distances.  He has no learning problems.  David is on Deflazacourt, ACE inhibitor and is enrolled in a drug trial at Ohio State.  We leave in 2 weeks for his "Wish Trip".  We are all very excited.  Merry Christmas to all.

So - Joshua's mom what are you giving your son in the way of meds and supplements?  I think others would agree that you don't generally see boys getting stronger at age 10 years old.  Granted the area of the exon could be an area that does not cause issues.  I see that you show "a multitude of supplements"  please elaborate. Thanks Char Burke

Joshua takes: deflazacort, carnitor, b12, ferrous gluconate (iron), folic acid, omega 3-6-9, calcium & magnesium, vitamin D, Idebenone, learning factors school aid and melatonin.  We also eat a real food diet which is high in protein and low in starch yet well balanced.  We rarely go out to eat, but that is by choice.  We haven't bought store bought bread in almost 4 years because we make it, and most everything ourselves so we know what we are eating.

I am glad that Joshua is doing well. My son Yanar just turned 8 years old on 12/21. We're about to starting him on Deflazacort.  How much Deflazacort do you give your son every day? Yanar takes multivitamin, D3, and COq10 every day. We also watch for his diet as well. Do you think the other supplements are helpful in making your son be stronger? My son is unable to go upstairs or walking too far. Please let me know.

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