So today is the start of October and to me that also means the start of Rett Syndrome awareness month.
This is a month that I work like to crazy to let everyone know about the devastating condition Rett Syndrome.
I have to confess I find Rett Syndrome awareness month hard.
Everywhere I go I am reminded of the condition that stole my daughter from me.
I see the photos, the blog posts and infographics and to be completely truthful I want to scream.
I know this is wrong of me but as much as I want to raise awareness I also want to hide from all that is Rett syndrome.
But I can’t and I won’t.
I may have lost my beautiful girlie to this awful disease but I do not want my friends to lose theirs.
I want everyone to know about Rett Syndrome.
I need everyone to know what amazing strides are being made in research.
I must make everyone know how much fundraising is needed to help fund research and to also help support those effected by the syndrome.
So self pity aside October is Rett Syndrome month and I will be doing my best to let you all know that this condition is out there.
What it is?
Debilitating neurological (movement) disorder that predominantly affects females.
Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old.
Caused by a single gene mutation that leads to underproduction of an important brain protein.
The leading genetic cause of severe impairment in girls – most cannot speak, walk or use their hands.
Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
As prevalent as Cystic Fibrosis, ALS and Huntington’s.
Who it affects…
Usually affects girls from 6 to 24 months leading to a devastating loss of developed skills.
That every 90 minutes another little girl is born with Rett Syndrome
And that the greatest news is that….
Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.
Did you get all that?
Outside of the Scientific community Rett Syndrome is still relatively unknown. Yet Rett Syndrome is a leading genetic cause of severe disability in females.
This is why we need to raise awareness.
People need to know more about Rett Syndrome.
They need to know that research into this condition has already shown the potential to help unlock other neurological conditions including Alzheimer’s and Parkinson’s.
What you also really need to know is that besides all these devastating symptoms what Rett Syndrome does not take away is the spirit of the girls who suffer from this condition.
Olivia was the strongest most determined girl you would meet. Although Rett Syndrome took away her voice it didn’t take away her desire to communicate. Her eyes became the window to her soul.
Olivia was so mischievous and so very loving her life was about love and laughter.
This is what we have to remember that behind the list of conditions there are girls.
Girls that want what we all desire.
To live life to the full.
To live a life not suffering from epilepsy, movement disorders, breathing abnormalities and so much more.
Help me make this happen.
Help me raise awareness of Rett Syndrome.
I hate Rett Syndrome with a vengeance but I love those girls fighting it everyday.
Help me make their future brighter.
More can be found out about this condition on the websites.
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