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Jylian's Place |
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You can call me Jylie Bean! Welcome to my website! It's for my friends, family, and other kids and parents who want to learn more about me. I was born with a rare genetic condition known as Loeys Dietz Syndrome. I am very happy, bright and full of life, and my family is so proud to share my story. At Jylian's Place you'll find my information, my pics, and links to my doctors and hospitals. |
2008- We attended our first Loeys Dietz Syndrome Foundation event through the National Marfan Conference in Boston. We met so many wonderful families, and Jylian was such a big girl! Please continue to keep her in your prayers. Please check out the LDSF website linked below. We are doing great things, and we need your prayers and support!
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Loeys Dietz Syndrome Foundation Children's Craniofacial Association
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Ivy Claire! After celebrating her first birthday in July, mommy finally found the time to update big sis's website! Here is our sweet Ivy Claire. Jylian, Mikey and Ivy love each other so much, and we love to watch them grow and play! |
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