The Families of Spinal Muscular Atrophy newsletter recently featured a mother's letter discussing her son's success in using EagleEyes. The letter was so inspiring, The B.E.A.T. decided to ask Patty Bottone about her son's experiences with EagleEyes.

What is your son's illness? What kind of disabilities does John face?
John has Spinal Muscular Atrophy Type 1 also known as Werdnig-Hoffman Disease. He is ventilator dependent, fed via G-tube, non-verbal and unable to move any part of his body other than a nod yes if he is sitting up in his wheelchair and his eyes. However he is extremely bright and very social.

How long has he had symptoms? When was he diagnosed?
John exhibited symptoms of SMA from birth as far as my husband and I are concerned. He had trouble swallowing, sleeping, a sunken chest, and a weak cry as well as his legs always being in a frog position. We took John to a neurologist in NY and to our dismay were given the diagnosis of SMA Type I in about five minutes. John was four months old.

How did you first hear of EagleEyes? How long has John been using EagleEyes?
I first heard of EagleEyes from a Physical Therapist who was coming to our house. She presented me with an article on Michael Nash and I was immediately thrilled by what I had read. It reminded me so much of how I often felt about John. So often I would get so discouraged and frustrated by how John was perceived by others just because he could not talk. People would see a child in a wheelchair who could not move, speak, eat, or communicate other than look up or down for yes and no. Most people did not even take the time to speak with John so that he could even give them a yes or no answer because they just assumed he was probably slow.

What bothered me even more was how frustrated John must have been knowing so much and being so bright but not being able to show it and communicate it to others. So a year ago John tried EagleEyes at Boston College and all of us at the session were thrilled by how well John did. He was finally able to independently play a game, Shoot the Aliens, and show that he was very bright indeed in that he followed instructions and knew what exactly to do within minutes.

How did John integrate EagleEyes into his life?
John's school district in Andover Township NJ just installed EagleEyes at school for John in April and he will eventually be learning his entire curriculum utilizing it. We also have a setup at home for John which was so generously donated to us from the parent of another EagleEyes user who had sadly passed away. Right now John is beating the computer playing Tic-Tac-Toe and mastering Shoot the Aliens. Next we will be teaching him to spell with the system and then to write sentences and then eventually as stated before, he will be doing all of his second grade schoolwork next year using the system. Who knows what he will eventually be capable of accomplishing using EagleEyes! It has truly added so much to his life and ours and he gets so thrilled when he shows others how bright he is with the help of EagleEyes.

How has EagleEyes changed John's life? Have you noticed a change in him?
EagleEyes has and will continue to be such a miracle in Johns life and ours. For the first time ever John is able to complete a task independently and he will eventually be communicating independently and effectively something which I did not know if it would ever be possible. Not because of John not being bright enough but because up till now there was nothing available to John to allow him to do that. We are so happy for John as parents because we can only imagine how frustrated he has been all of these years being so smart and unable to communicate it to others or to even be able to complete a task independently.

Has EagleEyes affected your life? the life of other family members?
All of our family members: John’s two brothers, his dad, his grandparents and nurses and me are all overwhelmed with emotion every time John utilizes EagleEyes. We are so happy for him and for what it means for all of us to be able to communicate with him one day totally. And we know that day is not far off.