Sponsored by Wrexham Trade Frame
Georgie Pie's Brighter Future was originally set up to raise funds for Georgia Edwards who is Four years old and lives in Johnstown, Wrexham. At the time Georgia was diagnosed with Global Development Delay and from June - September 2013 we managed to raise over £5000 for equipment to enable her an easier way of life.
On the 6th September 2013, Georgia was diagnosed with Rett Syndrome and our hearts were broken.
About Rett Syndrome
Rett Syndrome is a debilitating disorder which most often strikes previously healthy little girls just after they have learned to walk and say a few words and begins to drag their development backwards.
As the cascade of Rett symptoms descends, girls lose acquired skills, normal movement and speech. Girls are left unable to communicate or use their hands to hold, carry or manipulate objects.
Over time, girls who have learned to walk often lose that ability as well. Loss of motor control sets in, essentially locking these girls into bodies that won't work, leaving them without the ability to make puroposeful movements.
Complications are many, including:
There is no cure for Rett Syndrome.
Parents who discover that their daughters have this condition have no real treatment options. They are impotent in the face of this disease, as their little girl begins to fall, as her spine bends, as her body is racked with violent seizures.
Most girls with Rett Syndrome survive into adulthood, becoming increasingly more disabled over time. Invariably, they need one to one, 24 hour a day care for the rest of their lives. For families living with Rett Syndrome, the prognosis has always been poor, until the reversal experiments of 2007 catapulted the disorder into new realms of possibility, positioning Rett Syndrome to become the world's first curable brain disorder.
We believe that Rett Syndrome is reversible. Everything we do every day stems from this belief.
Join us. Help us change our children's future.
Georgie Pie's Brighter Future has two main focuses:
To raise funds for specialised equipment to improve Georgia's way of life.
From June to November 2013 Georgie Pie's Brighter Future has raised an incredible £9,156.44 towards specialised equipment, this is an amazing amount of money and it truly has made the world of difference to Georgia's life. Georgia's days are filled with endless therapies and every aspect of her life requires adaptions, this money has helped to make these obstacles more manageable allowing Georgia to enjoy life. Demonstrating just how vital these funds are £8,128.46 of this total has already been spent on vital pieces of equipment such as eye gaze technology, communication devices, adapted pushchair, specialised bed, physiotherapy equipment and occupational therapy equipment. Georgia still requires further equiment such as a specialised seating system and a specialised car seat.
To fund research into a cure for Rett Syndrome.
Georgie Pie's Brighter Future's ultimate dream is one shared by the thousands of families worldwide effected by Rett Syndrome and that is for treatments and ultimately a cure for Rett Syndrome. Scientists are extremely close to finding treatments and we firmly believe that these will come in Georgia's lifetime. Georgia is three years old, time is on her side however it won't be forever. With this in mind we decided to fundraise for Reverese Rett less than a month after Georgia was diagnosed with Rett Syndrome and to date with donations still coming in £3096.98 has been raised.
Georgie Pie's Brighter Future has chosen two charities to fundraise for - both charities focus on speeding treatments for Rett Syndrome and are run by families effected by the condition therefore they are extremely focused and driven to make our dreams a reality.
Click on the links below for more information or to donate
If you're interested in our work and would like to support us, read about us and the projects we've contributed to in the past.
Find out how by contacting us at:
69 Heol Offa, Johnstown
Wrexham, LL14 2AU
Tel: 07715 667253
Or use our online contact form.
Our membership has been boosted by the recent recruitment campaign in Wrexham. Thank you for your support!
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