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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. |
August, 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! We will travel back to Johns Hopkins soon for pre-op evaluations. Jylian will need to have her aortic root replaced soon. 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! After learning of Jylian's aortic growth this summer, we learned that Ivy will need to have a mass removed from her abdomen. This was shocking and scary, but it is believed to be benign, and we feel God's peace in this situation. Please pray for Ivy through surgery this month, and pray for no complications and a wonderful recovery as expected by doctors and mom and dad. We're ready to have these surgeries (Ivy AND Jylian) successfully behind us!! |
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