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| Grace at one of our fundraisers |
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Grace is a beautiful ten year old girl who has been diagnosed with a very rare disease called Sanfilippo Syndrome. Grace is missing a critical enzyme which would normally break down cells in her body. This condition causes a build up and storage in her system which has progressive and degenerative effects. The doctors say that Grace has an estimated life span of about fifteen to twenty years. There are similar storage disorders that have been able to be treated with enzyme replacement therapy; thus far this has not been possible for Grace’s type. We support Team Sanfilippo which is an organization that is on a mission to find a cure for Sanfilippo Syndrome as quickly as possible. We recently won a $250,000 grant from Pepsi Co which will fund research towards a clinical trial for a drug that may be used to treat the disease!!
Thankfully, Grace is unaware of anything other than what is happening right now, in this very moment. She lives each day with joy and peace.
“We should all aspire to be more like Grace who is simple, happy and content. Grace has no fears at all and she doesn’t “WANT” for anything. She is at ease; comfortable in her own skin, and lives 100% in the moment. She has no attachment to “things” and is in love with the basics in life such as food, physical activity, learning time, sleep, play and affection. All (but one) of these things are COMPLETELY FREE!! She loves herself and loves all people regardless of their color, religion, physical appearance, or world views. I think Grace’s purpose is to teach us to slow down and to focus more on what really matters. It is the simple things that bring us true joy and we should always be reminded to savor the immense blessings embedded in every precious moment of our lives!!” - Joan, Grace's Mom
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