Imagine having a beautiful child.
Imagine finding out your beautiful child won’t survive past two years old.
Imagine having ONE wish for your child.
Imagine everyone banding together to make the wish a reality.
This is the story of Lilie’s family, and this is the story of a nationwide community of caring people coming together to make a miracle happen! 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 according to the latest research. . . 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: http://www.caringbridge.org/visit/lilieclark
This family is a dear friend of a photographer friend of mine. I’m asking for your help. I (along with a group of fabulous photographer friends) would love to be able to get Lilie and her family to Florida. If we can get them to Florida (there are 6 in their family), they can stay with family…but with tons of medical expenses, right now it just isn’t possible.
So I’m asking for your help….anything that you could donate to this fabulous cause….$5, $20, $500...between us all, we can make this happen!
Sarah Ulrich (a phenomenal photographer and even more amazing gal) has set up a Paypal account for the donations. If you are willing to help out, please go to Paypal and send funds to the following address sulrich@neb.rr.com. Please put "Lilie" in the comment block.
Thank you, Amber, for sharing Lilie's story and thank you Sarah for coordinating donations!