Our Holiday Story: Daniel Yanak — A Fallen Angel
Written by: Debbie Ham
The sights and sounds of the Holiday Season are all around us. Bright colorful lights, Christmas music, children waiting in excited anticipation of Christmas morning.
During this time of year there is a sense of hope that moves us from the cares of our everyday life to participate in the joy that fills us, the hope of the season, and all the good that surrounds us. We also turn our thoughts to those less fortunate than ourselves even as we plan our holiday celebrations.
It is in this spirit that we ask you to take a moment to open your heart to the story of children that are struggling against a disease for which there is no cure. A disease that robs them of their ability to see, then takes their ability to walk, then talk, and ultimately robs them of a future. This terrible disease takes a bright shining little boy or girl and steals their thoughts, their memories, their understanding.
Our family is one of many families that have traveled this journey with a child – for us our beloved son, brother, grandson Daniel Yanak lost his fight against this disease on December 22, 2003 at what should have been the prime of his life. He was 23 years old. What stole Daniel’s dreams and hopes and broke our hearts? Batten Disease.
Batten Disease is a neurological degenerative disease.
Daniel was diagnosed with Batten Disease in 1991 he was eleven at the time, just twelve years later he died.
Advances have been made in understanding and diagnosing the disease. Twenty years later there is still no treatment and no cure for this disease. Twenty years ago we were given no hope when Daniel was diagnosed. For one child a week, today that is still true.
BDSRA (Batten Disease Support & Research Association, bdsra.org) provides services to children facing this devastating disease and funds research to find a cure. So while you are celebrating this season of giving and hope, love and good will; and while you are celebrating the children young or old in your life, please take a moment to remember there are children today that are hoping and praying for a cure.
Sadly in 2011, 52 more children will be diagnosed with this disease in the US alone. Some children, like our Daniel will lose their battle with this dreadful disease. Please help us change this. We are sharing Daniel’s story with you (www.thebattenproject.com) because he was such a wonderful person, so full of life and because we love him so very much and we miss him every day. We can’t change what happened to Daniel, but we can use this experience to help give other children hope. So please give to BDSRA. Help change the life of a child.
