Addison was diagnosed with rapid progression Retts Syndrome in 2012 after a history of developmental concerns since she was 7 months old.
Rett Syndrome is a neuro-developmental disorder that affects girls and results in deterioration of learning and loss of previously acquired skills.
Addison has a severe form, and experiences complications related to respiratory function, gastrointestinal function, expressive communication and motor skills.
Thanks to Variety
Addison is an intentional communicator who predominantly communicates non-verbally, including using eye contact, choosing with her eyes, reaching with her hands and operating a switch button with her hands, as well as producing some vocalisations.
Thanks to Variety, Addison now has her very own iPad with Switch software which she uses at home, school, in therapy and the community to support the development of her cognitive and communication skills, and enable her to interact and self-direct her learning and play experiences.
Switch software enable Addison’s family to create talking books and slideshows which Addison can independently access through the use of a switch.
Variety stepped in to help
Most recently, Variety granted the Read’s car modifications so Addison could be safely transported with her whole family. Before Variety stepped in to help, Addison was sitting in a booster seat in the family car with no postural support. The vehicle didn’t have the capacity to be modified for use by Addison and other members of the family.
Now Addison is appropriately positioned in the car, preventing risk of scoliosis and further respiratory complications. She can go to social events with her family and access medical appointments a lot easier. The car modifications have ensured that there will be a decreased risk associated with transfers before Addison became any heavier. Addison now has an efficient form of transport given the considerable amount of time she has to spend in the car going to and from medical appointments.
“Variety have supported our daughter Addison in so many ways. Addison has Rett Syndrome which among many other disabilities, robs her of the ability to speak. Variety kindly gifted Addison software with switching capabilities so that she could do jigsaw puzzles, read homemade books, access switch accessible apps and work on her recognition skills from a young age. They also gave Addison an iPad before she started school which other use to communicate with her socially and at school, using the same communication software that is on her eye gaze computer. It also allows her to tell news at school with the help of a switch, as well as allowing her to play despite her limited hand function.
We were also lucky enough to attend the Variety Motor Mouth Camp where Addison and our family learnt many ways of utilising and modelling Addison’s communication device. We had the most amazing time. And now that Addison is getting bigger, Variety has given us a grant to help with the cost of modifying our vehicle to make it wheelchair accessible, to allow us to transport Addison more safely and easier.
But above all…Variety has enabled our daughter to participate and do things that any other six year old girl wants to do, despite being trapped in a body that fails her, and that is the greatest gift of all”
Narelle Read