Ella is a beautiful, funny and loving 11 year old, but…
she has Rett Syndrome.

Imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder… all in one little girl.
Rett Syndrome is a serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear at about 12-15 months. It is potentially a life shortening condition, but some girls have lived until middle age.

Ella is unable to speak or use her hands. She cannot sit down or stand up on her own or walk far without help. She has breathing problems, epileptic seizures, and scoliosis. However, we believe Ella understands her environment and what is said to her, but crucially has no way to respond. She is locked inside a body that simply doesn’t function properly.

Imagine not being able to ask for a drink when you want one.

Imagine being unable to sit down when you are tired and not being able to ask for help.

Imagine having a headache and not being able to tell anyone.

This is what it is like for Ella every day.

As Ella is unable to use her hands, using an eye controlled speech generating device has the ability to unlock her potential. Many girls with Retts have successfully used eye gaze systems to communicate. Using such a device, Ella would at last be able to tell us some of her thoughts, wishes and needs, which would transform her life.

Here is a great link to further information on Rett Syndrome and the use of the Eye Gaze systems:
http://rettuniversity.org/

https://www.tobiidynavox.com/en-GB/users-conditions/user-conditions/rett-syndrome/