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Thanks for visiting my fundraising page.
On May 9th we will be walking a 40 kilometre route in the South Downs as part of Just Walk 2015.
We've joined together to raise money for the Rett Syndrome Research Trust, a cause that has touched all our hearts.
Please give anything you can to help us find a cure for Rett.
Even if you are unable to make a donation please share this page with your friends and family to raise awareness of Rett Syndrome.
About Rett Syndome:
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:
- Disordered breathing
- Severe digestive problems
- Difficulty eating, chewing and swallowing
- Orthopaedic abnormalities such as scoliosis and fragile bones
- Disrupted sleep patterns
- Extreme anxiety
- Seizures
- Impaired cardiac and circulatory function
- Parkinson-like tremors
- Sudden and unexplained death
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.
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