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hi
can anyone help me with advice, i have just found out my 11 week old has becker muscular dystrophy
Re: hiWelcome to the site.
Visit the “Has your child been diagnosed” page on the main MDC site.
http://www.muscular-dystrophy.org/newly_diagnosed/has_your_child_been_diagnosed
Also browse the Free Publications.
There are several that will help you at a difficult time."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: hiHi newmum,
taungfox has suggested a good place to start with that link. Please come back to us with any questions you might have, it is a lot to process and if any of us can help, feel free to ask.
Best wishes
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: hiHi! My son was diagnosed with congenital muscular dystrophy a few months ago and I am stil fairly lost as to how his condition will progress and what it will mean for him and us. He is now 13 months and is unable to sit unaided let alone crawl or walk. I have found it incredibly difficult trying to get my head around his condition and his future prospects. I am just trying my hardest to remain positive (a lot easier said than done!!) and trying to enjoy what I feel will probably be the easiest time in our lives as far as the condition goes. How are u getting on so far?
Re: hiHi,
I am a new member of forum. Would a newcomer be warmly welcome here? Good day you guys!!!__________________
Watch movies online freeRe: hiHi Kelly,
yes you are very welcome
we are quite a friendly bunch. It would be great to hear your story if wish to share? Hope you enjoy the forum!
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: hiHello Newmum.
I was diagnosed with Becker MD when i was 28! Although i am sad for you being landed with this news right at the beginning, in some ways this will be an advantage. You will be aware from day one at school and will be able to plan accordingly with regards to PE and also to plan for a sedentary job.Have you told your extended family and have they also been tested? My younger brother was ok and so far i am the only one although both my daughters are carriers and run a 50/50 risk of having effected sons.
If you don’t mind me asking, how did you find out about your son so soon? I was only diagnosed when i was struggling with stairs and couldn’t run, my GP gave me a simple blood test and they discovered my high creatine levels. Also i have pseudohypertrophy of the calf muscles which is a good indicator also.
I would be very happy to answer any questions you may have.
All the best
RanaldRe: hiHi, Im new here too. My 13wk old son was diagnosed with Duchenne Muscular Dystrophy at 10wks. My brother, Chris sadly passed away from this also, at the age of 20. We were told I was a carrier just after my son was born, as back when I was originally tested and my brother too (93 ish) they couldnt find the missing deletion in my bro, so couldnt tell me for definite if I was a carrier or not.
Im also trying to keep positive but could cry at the drop of a hat. Life can be so cruel sometimes. I really feel for my parents too, they will have to go through it all again.
I feel a bit lost. Its all well and good having things to read but I know what will happen and how this will effect him in the future. I have a good local gp and health visitor, but unless you are going through this yourself, you cant really understand.
I am lucky that I also have a 2yr old daughter, who keeps me busy. This way I dont have time to think.
Re: hiHi Helen welcome to the forum I’m glad you found us.
I’m not going to say I know how you feel because I don’t, I don’t have any children so I cannot relate in the that respect. What I can do is tell you how my parents felt when I was diagnosed at 8 (I’m now 37). Although it’s slightly different to you as neither of them had any previous experience of MD. My mum describes it as the worst day of her life they told her that I probably wouldn’t make it past 15!!
I guess what I’m trying to say is nobody can foretell the future even doctors. They also told my parents there would be a cure by the time i reached 21 (once I got past 15!!) There was no cure by the time i was 21 but the research had come on leaps and bounds and is still doing so.
Your son is fortunate and has time on his side. Who knows by the time he reaches 21 there may well be a cure.
Re: hithanks vicki, you are right i know. things still a bit raw at the moment. sorry for the grammer but am typing this one handed, whilst holding harry lol. it helps to know that we arent alone, there are other people in our position and as i always say, it could be worse. thank you xx
Re: hiI am dreading having to tell my 2 daughters that they are both Becker carriers, i have asked the ex if i can be the one to tell them when the youngest starts High School and i think i have her agreement. I just hope that in the next few years we have some advancement in this area, i am not bothered about being “cured” myself but would do anything to take their unwelcome inheritance away.
At least they only stand to have an effected son, that is something i suppose.
Ranald
Re: hiHi
I am also new to this forum. My 2 year old son has congenital fibre type disproportion and I would like to hear from anybody with similar conditions, I attend local special needs groups but none of the other children have neuromuscular conditions.
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