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Sylvie Lianna’s Story

Site created on June 5, 2008

Welcome to the site of Sylvie Lianna Isgro-Schicker! Our beautiful girl is living with Krabbe Disease, a rare metabolic disorder effecting the central nervous system. In appreciation of all the wonderful support we have received, we wish to share updates about Sylvie and our family's journey in the face of this devastating illness.

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Sylvie Lianna and her twin sister, Uma Claire were born on January 23, 2006 in Western Massachusetts. The first year of their twin lives was full of wonderful chaos and blissful love. By their first birthday, however, it became apparent that little Miss Sylvie had begun to lose some of the important skills she had recently acquired. Not yet walking or standing, in the first months of 2007 Sylvie lost the ability to sit by herself, hold her bottle, and feed herself. For the rest of the year, as Sylvie's ability to eat and support her own weight continued to ebb, she and her family began a long journey of medical tests, blood draws, surgical procedures, ending with a diagnosis of Krabbe Disease in Jan. 2008. Sylvie's twin sister does not have the disease, but she is a carrier. Krabbe is one of a group of rare genetic disorders called leukodystrophies that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. Without myelin, nerve impulses are slowed or mis-directed resulting in loss of motor function. There are several different proteins required for proper myelin growth, and a problem with any one of these proteins results in a different leukodystrophy: a deficiency in the protein called galactocerebrosidase results in Krabbe. Today Sylvie is completely unable to roll over, hold objects, or move in any coordinated way. However, she can see, hear, feel and love with her whole being.

Newest Update

Journal entry by Kirsten Isgro — 16 hours ago

Spring is upon us. The sun is shining, the eclipse was in its totality on April 8 here in Vermont, and flowers are blooming. A year ago we launched into another phase of Sylvie's journey, and she was admitted to home hospice. In 2023, we had a little cabin holiday and came home with a kid in serious respiratory distress. This afternoon, Sylvie is resting peacefully and we're trying our best to fend off adverse allergy effects. In the words of Duke Ellington, “Gray skies are just clouds passing over.”

Read More of the journal titled "April 26, 2024"

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