Sweet Revenge Raises $2,400 for the GSF in Memory of Ciara Van De Loo

Sweet Revenge: A Benefit in Memory of Ciara Rose Van De Loo was a cupcake, wine and beer tasting held at the Gnarly Vine in New Rochelle, New York — and it was an incredible night for many reasons. The amazing Van De Loo family turned what should have been their daughter Ciara’s 1st birthday celebration into an opportunity to fight SMA and raise funds in her honor, and they bravely did this just two months after losing their precious little girl.

With the help of friends and family, the Van De Loos created a night to remember. They had silent auction items that included signed sports memorabilia, jewelry, and experiences at some of New York’s finest destinations. They gathered friends and family who in turn brought friends and the Gnarly Vine was quickly packed full of people — and because of the Van De Loos so many new people learned about SMA, the #1 genetic killer of young children. In addition, each guest received a booklet with information about SMA and ways they can get involved. This booklet also included a beautiful letter from the Van De Loos about Ciara:

Ciara had a smile that lit up a room and eyes that captured everyone’s attention – greeting them with a touch whenever they got close enough for her to reach them. She was inquisitive and loved to explore new things. She was brave, quick to forgive those who hurt her, and so peaceful to be around. It was the best part of our day to lay down alongside her and read a book or listen to music. Her inability to move made her mind sharper and her spirit calmer.

When we are asked if it is a “relief” to not have to care for her anymore, we don’t get angry because we understand where the question comes from — a lack of understanding. Is caring for a child with a disability difficult? Absolutely. Is it incredibly rewarding? You better believe it. We would have taken 100 years with our little girl and would have cared for her every minute of those 36,500 days, and then some — if we were only so lucky to have that much time with her.

We are so honored to know the Van De Loo family. Since Ciara’s diagnosis they have been crusading against this brutal disease. We are humbled the GSF was one of three charities to benefit from their Sweet Revenge event. In addition to the $2,400 donated to the GSF, Sweet Revenge also supported FSMA and the Elizabeth Seton Pediatric Center where a trail will be established in Ciara’s memory.

Thank you Van De Loo family and all those who participated in this special night!

About Victoria

Mom fighting to END SMA, the #1 genetic killer of young children.

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