Grant for a child with Rett Syndrome
We have more wonderful news to share with you, regarding another special little girl who has recently benefited from a Friends of Alfie Johnson funding-grant.
Amy Dimmick is almost 3 years old and a delightful little girl, who lives at home in Stourbridge with her mom, dad and older brother. Amy has a number of additional needs which include epilepsy and malrotation, which is an abnormality in which the intestine does not form in the correct way in the abdomen. She is also fed via a gastrostomy into her stomach.
At an early age, Amy was diagnosed with a condition call Rett Syndrome, which predominantly affects girls.
Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.
Last year, Amy was given the opportunity to trial an eye-gaze system at home through a company called Smart Box, which had a positive impact on identifying Amy’s abilities by using this state of the art system. She has also demonstrated purposefully that she can activate switches to operate toys and control ‘cause and effect’ games on an i-pad.
The eye gaze system is an eye-operated communication and control system that empowers people with disabilities to communicate and interact with the world. By looking at control keys or cells displayed on a screen, a user can generate speech either by typing a message or selecting pre-programmed phrases. Eyegaze systems are being used to write books, attend school and enhance the quality of life of people with disabilities all over the world.
The eye gaze is a remarkable piece of technology that helps many children worldwide and in turn, has helped Amy, albeit for a short trial period. As with any technology of this specification, it comes at a high cost. These systems are in excess of £4,000 which as you can appreciate, is difficult for many families to be able to fund.
Amy’s parents were in the process of fund-raising to buy an eye gaze system for Amy, but, I can proudly announce that through a funding grant provided through our charity, we delivered one of these fantastic systems to Amy and her mom in person yesterday, along with communication switches and accessories for the eye gaze system. This has only been made possible through the fantastic support we get as a charity from our wonderful supporters.
With your help and support, you are helping to change the lives of Children with Disabilities and their families like Amy’s. For that, we are truly and most sincerely grateful.
Thank you to everyone who attends our events and who support us through their own fundraising challenges and kind donations, you are all making a real difference to the lives of some amazing children, so please, be very, very proud of yourselves.
To read more about Amy and her progress, you can visit her Facebook page, Amy’s Army.
Again, thank you all for making this happen for a very special little girl and her amazing family.
With love and thanks
Friends of Alfie Johnson