Sunday, December 30, 2012

It's confirmed!

Following on from my letter to No.10 and my reply from the Department of Health in October, Estella's mummy and daddy today confirmed in their post New Dawn, New Day that the UK National Screening Centre will review SMA screening programmes including pre-conception, antenatal and newborn screening for SMA, stating that a public consultation will take place in the new year.  This is a big day for SMA and for Estella's parents who have worked tirelessly to raise awareness of the genetic condition that robbed them of their precious baby girl.  It is a big day for the 1 in 40 of the general population who do not know that they silently carry the gene for spinal muscular atrophy and that subsequently, should they fall in love with another carrier and have a baby, they have a 1 in 4 chance of giving birth to a child with SMA, a condition which will potentially, depending on the grade of SMA, limit the life of their cherished child.  This public consultation gives hope to many and hope, as we know, is an extremely powerful force.


Midlife Singlemum said...

Congratulations on this result. And I wish you all a Happy Hogmanay. xxx

BavarianSojourn said...

That is good news. Congratulations... xx