i see, i bet it feels like everything is dragging :-(
I'm ok at the mo. Joe is doing well but is knackered since going back to school. He's been very tearful and argumentative...but whats the betteing he wont lie in tomorrow ...like he's tried to do all week ;-)
I am so very sorry to hear about your god son and his cousins, its an utterly devastating time for you all, but you will wake up one day and not cry. I'm not saying you ever come to terms with it but you sort of just get on with life as normally as possible but arming yourself with information and educating yourself on DMD and more importantly the research going on is a great way to hit this disase head on.
At the moment clinical trials are going a head and they look extremely promising, these are Mdex molecular patch or exon skipping and utrophin upregulation. Have a look on the Action Duchenne or The Muscular Dystrophy Campaign websites for more info...its very very exciting!!!! Also there is another forum.. mdforum.co.uk which is great for advice and a laugh believe it or not, everyone there is so lovely and welcoming.
Have the boys been offered muscle biopsys? This will tell you what exon is missing or indeed has been duplicated and this is a very important piece of information as your friends will need to get on the DMD Registry through Action duchenne and that way he will be called for clinical trials if his exon is the one they are currently working on. It all sounds mind blowing but it will all fall in to place.
Are your friends in P'field as well? I would be more than happy to meet up with you all for support if thats what you would like. I'll leave it with you as I know its early days..failing that you can email me any time. A group of us mums also meet up once a month in Port Solent for brekkie and thats a good source of support too...you'd be most welcome. The next meet is 14th Jan @ 10am at Lloyds bar, Port solent.
But for now all I can say is be patient and understanding of your friends, its a huge thing to take on board and they will be going through a sort of grieving process. Expect a heck of a lot of tears, maybe depression. Its a very hard time. Another really important task for them is to get their son in to a centre of excellence namely Great Ormond Street or Newcastle...the other hospitals just dont have a clue and its so important your godson gets the right care!
All I can say is there is hope...a huge amount of hope. The scientists are so close to treatments and ultimately a cure. 5 years ago parents were being told "your son has DMD, enjoy what time you have left, there is no cure"...mind you this is what we were told...hence getting the heck out of Southampton hospital and going to Great Ormond street!
Please keep in touch and let me know the out come of the results tomorrow.