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.
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2 comments:
Congratulations on this result. And I wish you all a Happy Hogmanay. xxx
That is good news. Congratulations... xx
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