Amber, Sarah, and Sandy Royalty

Amber was 8 years old when she first had problems with her vision. She is now 16. Amber was diagnosed with Cone/Rod Degeneration. For eight long years, Amber has fallen though every "crack" the system could possibly have. In third grade when her blindness was first discovered, the public school would not let Amber be placed in learning disability. Their reasoning was because Amber would not be a success story and correct her learning. Then they took three years before braille would be taught to her. By now she had learned everything sighted and could not change her learning process. As parents, Randy and I were at a loss dealing with IEPs, (Individual Educational Program). I feel we were intimated by the fact that the people teaching our child were suppose to be educated. I found out they knew nothing about our child and even less about educating a blind child. We were inexperienced, and believed that our child could be educated in this school system. When Amber was in fifth grade she was sent to Illinois School for the Visually Impaired for evaluation. They told us Amber would be better off at their school. My response was, "No, I want Amber at home, where we can take care of her." However, I continued to get the impression that our school did not want to "deal" with her. During all this time our six year old twins were diagnosed with the same thing. We found our mistakes and also had to work with different people. Sandy and Sarah had a wonderful principal who fought for every special service they received. They faired better than Amber.

Amber Feb. 2006 There comes a time when you are forced to make decisions you don't want to make. In May of 1994 we came to this point. Randy and I decided after nearly destroying each other, that we had no choice. Amber needed to go away to school, where she would be around children and teachers who knew all about blindness. This is the same year that our school was torn apart with sexual abuse allegations against the superintendent. My fear of sending her and my fear of her never learning beyond a third grade level kept me up at nights. The state came in and removed the problem with the superintendent. A new beginning for all.

Sandy Feb. 2006 Amber was losing her sight and not able to learn for five years. Sandy and Sarah were following the same path. We were parents lost at sea, with no hope. We were just settling in with the prospects of having three blind children, when the school asked us to have Amber see another doctor. There was something else wrong with her. Ten months later, we were told Amber had Batten Disease. Two months later Sandy and Sarah were diagnosed. I can't express the pain we felt. I think everyone deals with their situation and pain differently. However, I feel that finding the Batten support group has been a blessing for us.

Sarah Feb. 2006 In June of 1996 we experience the greatest trip I could imagine. We had a pilgrimage to Lourdes, France. The miracles we have received are never ending. The joy and peace the girls inspire in others are too great to count. I still have trouble dealing with the girls, but we are doing better.

Batten Disease has brought a great deal of sorrow to our lives. But we have met good people who encourage us, support us, and pray for us.

Batten Disease is hard to diagnose because there is not enough known about it. There are countless stories of different children, and they all sound the same. Initially, incorrect diagnoses and no treatment. But though it all our children bring us joy, laughter, and love.

Randy & I would love to hear from other parents or anyone who reads this. You can reach us at our e-mail: royalty@adams.net.

Dated July 6, 1997.

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