Monday, March 18, 2013

Brilliance in Blogging


Do you know that 1 in approximately 50 of us carries the gene for Spinal Muscular Atrophy (SMA). 

Approximately one million people in the UK are SMA carriers (about one in 50 people).

Approximately one in 20,000 babies is affected with severe SMA and dies before they reach a year of age.

Just now there are between 5500 and 6000 people living with spinal muscular atrophy in the UK. 

Type II is the most common form of SMA and the form that my daughter has.

Spinal Muscular Atrophy (SMA) is a genetic disorder that affects nerve cells so that muscles can't be used and become wasted, or atrophied.  SMA affects the nerves in an area of the spinal cord called the anterior horn. The nerve cells become damaged, breaking the link between the brain and the muscles. As a result, the muscles can't be used and waste away; the weakness is progressive as the child grows.  This can lead to problems with breathing as well motor activities such as crawling, walking, feeding and head control.

SMA is a genetic disease and types I, II and III are autosomal recessive conditions meaning that if both parents are carriers, there is a 1 in 4 chance of their child having the disease.

Startlingly, after cystic fibrosis, (SMA) is the second most common lethal autosomal recessive disease in Caucasians and yet very few know of SMA.  Over the last few years many have started to raise awareness, some talking publicly of their grief on losing their baby to SMA and others fundraising to give their children the best chance at early mobility.  The word is spreading via Social Media; British Mums and Dads are paving the way for their children and those not yet born.

You could be affected, just as my family has been.  The  cold hard facts are here but they don't tell you much about living with SMA as each child born with the disease is different, each family coping with a disabled child in their own way. 
I write here not just to spread awareness of SMA but also to tell you of the normal life possible when living with a disabled child.  I am appealing to you to nominate Touch and Tickle not because I think that I am one of the top blogs in the parenting blogsphere but rather that I want to shout out about SMA...

The government are looking at pre-natal screening for SMA, there is more research into treatments happening around the world, but few people have heard of SMA into recently; I want to help change that. 

Why do I want to be nominated? So that SMA can be recognised and that women can be informed of the potential risk of SMA when planning a pregnancy.  It really is that simple -  I want to spread the word; I want SMA to be known of in every household because 1 in 50 of us are carriers: can you help me to spread the word?

If you can Tweet SMA, Facebook SMA, go viral with SMA and take a minute and nominate Touch and Tickle: give SMA the hearing it deserves.

Thank you for visiting today; if I have achieved one thing, it is that you now know that SMA exists.

If you would like to nominate Touch and Tickle, you can find the nominations form here.

Nominations are open from today until the 12th April.  The blogs with the most nominations will go through to a final phase of voting sometime after then before the BiB Awards in June.  Touch and Tickle made it to the final 20 last year; can you help take Touch and Tickle all the way to the Awards this time?


1 comment:

Bright Side of Life said...

I will come back tomorrow. Heading off to bed.