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 me (and hopefully all of you), committing myself to find a way to make this 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 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: http://www.caringbridge.org/visit/lilieclark
This family is a dear friend of a good friend of mine. I’m asking for your help. Myself (along with a couple photographer friends of mine) would love to be able to get them 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 guys’ help….anything that you could donate to this fabulous cause….$5, $20, $500…I get approximately 500 visits to my blog daily, if each person donated just $10, we could have $5000 in just one day…that would be A-M-A-Z-I-N-G!!!! Put yourself in their shoes, imagine having one last wish for your child.
I have 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.
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