This is a blog post which had to be written..oout of grattude and as an aknowledgement of the work of this organisation.
I first came into contact with this organisaion through an inspiring lady called Kelly.
It was 9/9/ last year and I had just blogged my 'results day' post.My world had fallen apart, all my hopes and dreams for my little girl shattered.
She had 'got through' being born at 25 weeks only to be hit by this.We had arrived in a foreign land without a map or guide book.Kelly commented on my post saying ''there are moms out there JUST LIKE YOU ready to help''
I felt like I had been thrown a life line....just like me.....could it be that I wasnt as alone as I feared?
I followed Kelly's link to her blog where I read about her adorable little girl called Brooklyn, who also has Rett syndrome (and Boston her little boy..sorry couldnt go without mentining this uber cute little guy..love ya sweetie xx) and subsequently the organisation Girlpower2cure.
These wonderful people raise awareness of rett syndrome through fundraisers andthe 'purple card' which they personalise for you to hand out to people.
They support other rett families through their website Rett girl.org which is a mine of useful day to day information, eye gaze pages and the more recent 'Rett we can channel on YOU TUBE shoing the amazing potential of our Rett girls - take a look.I promise you,you will be amazed...our girls ARE in there!!!
They also produced a Girl Power CD.Songs especially for girls,which my daughter is addicted to and which inspired the murals you see in this post.
More importantly they raise money for RSRT (Rett Syndrome Research Trust)...our hope for a cure comes from the many research projects funded by this organisation.
Since then I have been in touch with other organisations and recieved support from the lovely Julie at Rett UK and also been in contact with RSRT directly but GirlPower2cure is very dear to my heart..because it is run by people just like me, mums struggling with the day to day living in 'rettland' showing and inspiring us to rise above this devastating condition and never give up.The ethos of Girl Power and Girls helping girls fight Rett syndrome is awe inpiring.
So this post is a 'thankyou' not only for the work you do but also for throwing me the lifeline that I badly needed then.I hope my blog followers will check out this great site http://www.girlpower2cure.org/
Thank you Guys - you ROCK!