Becker muscular dystrophy

Hi Amc

I cannot begin to imagine how you are feeling as a parent finding out a diagnosis. There is such a lot to process and I’m sure you have many questions at the moment. My parents must have gone through similar when I was young. I am now 40 and have a type called Ullrich CMD

There is support out there and we will do our best to signpost and support the best we can.

I don’t know whereabouts you are or if you are being seen at a Muscle clinic. A good place to get practical information and help navigating things is via your regional care adviser.

Here is a link to the care adviser contact details by area

Give yourself time to digest everything, give your boy a big hug and please feel free to ask questions or share your thoughts.

It is indeed a difficult time for any parent trying to cope with a situation like yours. I went through it with one of my sons when he was diagnosed by FHSD. Perhaps made a little easier as I was diagnosed at the same time. Nearly 25 years on he is a very successful IT person who can build, repair and modify computers as well as create websites and write code for apps. A far cry from or worries at the time as to what would become of him.
But your last sentence sums it up. You say he is a happy boy which does not let these changes phase him, but I strongly suspect that is because you are being positive, even if inside your brain is tearing itself inside out with concern and worry. It is what parents do, and clearly you are doing it well in supporting him. You will find a way together and give him a great future.

To any parent out there who is coping with a recent Becker diagnosis, I just wanted to assure you that not all of us are greatly affected by our conditions as we grow up. I wasn’t diagnosed until the age of 28, and am still ambulant at the age of 44. (I’m only starting to consider a scooter for longer distances, I still don’t even require a stick, despite receiving nagging to the contrary from concerned family)
The one positive to cling to is that BMD is so variable between different people, your child may be one of those lesser affected too, and if not, at least it’s not Duchenne!