making muscle wasting history

The Welsh Government says that the reasons behind the withdrawal of the service are due to:
- the withdrawal of the blood spot external quality assurance scheme and quality control material by the centres for Disease control in t he USA
- problems with the supply of commercially available reagents needed to undertake the test.

This seems ludicrous and all a bit too convenient if you ask me. The Welsh Government (WG) have also agreed to implement TWO new newborn screening tests next year for Sickle cell disease (not very common in Wales) and MCADD.

My son was diagnosed on the newborn screening at a few months old and although devastating news I really think I would not have coped with the news later on. I also think that my son has coped with his condition so well because we had time to prepare as parents.

Gps are not able to diagnose DMD no matter how much training they have. Some parents believe we should not have newborn screening as we spoil the time we have with our son's when they babies and infants. Sadly this news has to come some time but for some it is continuous visits to the GP telling them something is wrong with their son and them telling you that you are being a fussy mother. We want to raise the profile for DMD. We are the only country in the world (I think) to do this pioneering screening. I think the WG has been influenced by saving money and getting the wrong messages.

With no DMD screening we will have no chance of getting a specialised centre in Wales. If there is or cure for DMD found we will all have to move to England to get the treatment.

If the test is not good then make it better!!!