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Double digits….

10 years ago today we welcomed our daughter Tatyanna into this world. A solid 9 lbs, 11 oz with soft downy hair and enormous brown eyes, she was perfect. Little did we know that her tiny body harbored a time bomb that wasn’t set to go off for several more years. As she grew into a bright and precocious toddler we had no reason to be concerned, she met all of her milestones early, everything was as it should be. At 2 years old she could scale to the top of playgound equipment and would swing monkey like from our curtains. She had so much energy that she seemed to sparkle and the house often rang out with sound of her infectious giggle. When Tatyanna was 4 we noticed that she began to trip and fall with increasing frequency and grew concerned. This began the long process of searching for answers. On February 19, 2008 we were told that our daughter had late infantile Batten Disease. Affecting only a few hundred people worldwide, Batten Disease is considered a Rare Disease. At this point in time Tatyanna’s condition is terminal. There is no treatment and no cure. Birthdays are bittersweet. The little girl who once celebrated with gusto is now trapped inside a body that refuses to function. At 10 years old, she has reached her life expectancy.

Not only is today Tatyanna’s birthday, it is also Rare Disease Day. Batten Disease is only one of many conditions that are considered rare. Because of their status they receive very little in terms of funding for supports or research. This needs to change…. and it will! “Alone we are rare, together we will strong.” We have hope. In honour of Rare Disease Day I ask you, please take a moment to share Tatyanna’s story. Help spread awareness. www.tatyannashope.com

 

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