Lilie is terminally ill. She has been diagnosed with GM1 Gangliosidosis. It is a rare, incurable lysosomal storage disease (enzyme deficiency) that will ultimately take her life by what research shows. . . by the age of two. She will continue to degenerate, go blind, have seizures, and eventually lose all ability to move and succumb to this disease. She is all but blind and her mom (Jen) is spending her last days enjoying what life is left in her daughter.
All Jen wants to do is take her daughter to the Ocean before she dies and Make a Wish will not grant them the wish because she is under two and they believe that Lilie will not get any benefit from it that it would only benefit the FAMILY… Jen is devastated.
Visit their Caring Bridge page here
This amazing girl from my Photography forum started a fund to help them. If you would like to donate, please go to her site here to find out how!!
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