I feel very lucky to have such awesome nieces and nephews, I love my family and would do anything for them! 

One of my nieces is particularly special, her name is Sydney, she is 8 and has a neurological disorder called 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.

Sydney has never crawled, walked or talked. She is Gastro tube fed via a mic-key button in which she is fed just milk and water. She has severe scoliosis (curved spine), and recently we have discovered both her hips are almost dislocated! Both of which will require surgery.

Sydney has lots of good days but also just as many bad. Seizures take a hold of her daily life, if you have ever witnessed a seizure they are very distressing and heartbreaking, to see someone you love who's body is uncontrollable, while you can only sit back and wait for the attack to end feeling so entirely helpless, is indescribable!

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

This is why i am taking part in a 60k walk for Rett syndrome Research trust UK, Money for research is what we need to cure Rett syndrome, Cure Sydney!

 

Please Give What you can, Every little helps!
Thankyou for helping to help fund research for a cure.

Auntie caz xxx