making muscle wasting history

After I sent an email about the charity, BBC Hereford & Worcester contacted me and came to my home to do an interview yesterday.
You can listen again here over the next few days, the interview was split over 2 programs so 2 links! It doesnt take long to listen to as I have located the sections of the interview. They did 2 slots on 2 shows throughout the morning, and also on each news and whats coming up bulletin. These are the links and times of the main interview.

http://www.bbc.co.uk/iplayer/console/p004g136 one hour 6 minutes in and 2 hours in
http://www.bbc.co.uk/iplayer/console/p004g1382 again 2 parts, first at one hour in, and just over 2 hours in. Glad they didnt play the parts I blubbed through! Yes I may sound "together" but I did blub trying to explain how it has affected my other children. Facts and figures are one thing, my childrens heartbreak is another.

This is free advertising for the charity, it raises awareness of the condition and we have found this can lead to some amazing support. Its often not easy to talk about these things as a parent, but if ever you want to raise this kind of publicity and feel at all concerned, your regional advocate would be more than happy to do the talking for you!

How can something this severe remain so little known? Hopefully this kind of publicity will go some way to changing that.