An interview with Jolene Mackay, mother of Chase Mackay. Chase lives in West Jordan, Utah with his family. Chase is 20 years old and attends Jordan Valley School.

What is your son's illness? What kind of disabilities does Chase face?
Chase has a form of leukodystrophy called Alexander's Disease. It is a disease that affects the myelin sheath in the brain. It is referred to as demyelization of the white matter of the brain and is a progressive disease. Chase can no longer walk and is confined to a wheel chair. The only parts of his body that he can still move are his right arm and his head, but both are very limited. He communicates by raising his eyebrows for yes and no questions and uses his big beautiful smile as another form of communication. As the disease progresses he continues to lose the ability to do things that he once could do.

How long has he had symptoms? When was he diagnosed?
Chase was diagnosed when he was almost four years old. He could walk and talk, although it was apparent that there were some delays in his fine and gross motor skills. He started having seizures when he was 18 months and the doctor at that time thought h e had mild cerebral palsy. After several years of tests and examinations by many doctors, a doctor at UCLA, a specialist in leukodystrophy, concluded that he did have Alexander’s type leukodystrophy. Chase continued to walk and communicate for many years, however being a progressive disease, little by little he started loosing ground. I think one of the hardest things for Chase was not being able to talk to people. He has always been very social and loved being around others, but soon we began sensing his frustration when he started having difficulty expressing himself. He started finding other ways to communic ate, but as it became harder he seemed to give up. I still believe that he is a very smart young man trapped in a body that just simply cannot function. That is why we were so excited when we became aware of EagleEyes and what its potential is. Chase get s that spark back in his eye when we talk about EagleEyes. You can feel his excitement when he can make choices, play games, and just have some say in his activities.

How did you first hear of EagleEyes?
Chase was first introduced to EagleEyes at his school. His teacher and another staff member contacted us and told us that they were impressed with Chase and his ability to use the EagleEyes program. We got online, read several articles, and watched video clips of Michael Nash. Soon our entire family was gathered around the computer watching the graduation of Michael; it brought all of us to tears. We all felt that this would maybe be the way that Chase would be able to experience some of the joy of not only communicating but enjoying interaction with his family and friends.

How did Chase integrate EagleEyes into his life?
He started off using the paint program, the alien game, and downhill snow skiing. Playing these games allowed him to be in control of something he liked to do. It also gave him the ability to play games with his dad and brother. Not as a spectator but as a player in the game. He likes having some control. One time he was playing downhill skiing and was doing great, then all of the sudden he kept hitting trees over and over. He began laughing hysterically and wanting to keep doing it. I think he was bore d and thought he would rather crash and see the reaction from the computer and us. It was much funnier than missing all the trees. The best part was that he could do it the way he wanted to. Chase loves to be included in the things the family is doing, a nd EagleEyes allows him to do that, and more. He can be the center of the game, the one who everyone tries to beat. Although the games are a lot of fun, we are really excited about the Clicker program. This program allows Chase to be able to make choices and communicate what he wants to do. It gives him the ability to choose such things as what game he wants to play. He can choose between TV, radio, or games; choose a favorite food; the possibilities are endless. Our goal is to program it so he can share his feelings or if something is bothering him. We still have a lot to learn about Clicker, but I think it will be great. We are not sure how well he will be able to do all of this, but it is our hope that the EagleEyes program will be the tool that will unlock the door for Chase to communicate more than he can at this time.

How has EagleEyes changed Chase's life? How has it affected the members of his family?
Chase really likes spending time with his family working on EagleEyes. It has been an ongoing project for Chase and his dad as they have experimented with the programs and adjusted them to fit Chase's abilities and needs. This is something that we are st ill working on, especially with the Clicker program. Our family has spent a lot of time watching Chase and playing along with him. Sometimes it's just making up funny sentences about the other family members or playing shoot the aliens with a picture of Chase's brother as the alien. We have a lot to learn about the program but it has been a wonderful blessing so far just to be able to see Chase have a way to communicate and interact with the family in a way that he has not experienced for a long time. We will be forever grateful to all of those that spent the time and money to create this wonderful technology. There is a lot of love put into this project. We are just thankful to be a part of it. If it weren't for the Opportunity Foundation of America we probably wouldn't even be aware of the EagleEyes program, so to them we will always be indebted for their generosity in gifting Chase with this program. We are truly blessed to be a part of it.