By Amy Falkofske
It all started with a little girl in Bristow named Julia, who had a rare genetic disease called I-cell. Sweet Julia Grace, as she’s now known, passed away in 2013 at the age of 12, but left a lasting impression on the hearts of everyone she met. So it seemed only fitting that she leave a big legacy, and that she did.
The Sweet Julia Grace Foundation (SJGF) was started in July 2014 to help “bless, celebrate and love children who are chronically or seriously ill, have special needs, or [are]in the midst of a medical crisis.”
When Julia first passed away, her mom, Sara Knight, just needed time for things to settle. She couldn’t even begin to process how to use Julia’s memorial fund to honor her memory. “I never thought of her not being here,” Knight said.
Julia also had a very special relationship with her older brother Cameron. Whenever she was having a rough day, he would stay home with her instead of going out with his friends, and he would sometimes sit with her until she fell asleep for her nap. Cameron took Julia’s passing hard, but was ultimately the one who had a revelation that helped his family process Julia’s death and move forward.
“He said, you know, Julia spent her whole life being unselfish, and now it’s time for us to be unselfish and let her go because she’s happier now. She’s not suffering anymore, and we cannot be selfish about this,” Knight recalled Cameron saying.
“Honestly, that has been my saving grace because I could never imagine what I would do without her…That was my piece of peace,” she said. When it was time, God gave Knight the vision for the Foundation quite suddenly. “Literally, one night the vision for the foundation just came to me like that,” Knight said.
Knight knew instantly what the logo for the foundation would look like. It would be a little girl holding an umbrella and going through puddles with her little puppy dog. The puppy dog is Julia’s puppy, Tucker, who is still with the family. And the Foundation would help other children with struggles similar to Julia’s “dance in the rain,” just like she did.
“Life isn’t about waiting for the storms to pass. It’s about learning to dance in the rain.” That was Julia’s life quote. And Knight said that’s exactly what Julia did.
“No one would come into her world without walking away being completely inspired because no matter what she went through, she always had a smile on her face, and she was always laughing. She definitely did not let what she went through stop her from enjoying the life she had,” Knight said.
For kids with challenges similar to Julia’s, daily life is a struggle, and Knight is amazed at how well these children handle what they have to go through. “These kids are so resilient. They enjoy life… They are not waiting to feel good to smile. They’re not waiting for a better day to be happy. They don’t complain. They do what they’ve got to do and then they move on,” she said. “It’s almost like it is what it is, and they’re not caught up in what it should be. So that’s why we call these kids Raindancers, because they’re all dancing in the rain no matter what they’re going through.”
The SJGF was also born out of Knight’s desire to share the lives of other families who are going through what she went through with Julia and to help them with their struggles. “When Julia was living, I prayed all the time that God would give me an open door into these families’ lives,” she said.
The broader mission of the Foundation is to “grant wishes, meet non-medical needs and fill in the gaps,” according to Knight. And filling in the gaps can mean a lot of different things depending on what a specific family needs.
For instance, one family may need meals. Another family may need a special table or special stroller for their child that they can’t get for themselves because it’s too expensive. Currently SJGF is helping the family of a child named John in Manassas build a handicap-accessible bathroom in their house for him.
All of these things are examples of how SJGF helps children “dance in the rain.” To date SJGF has helped more than 30 children in Northern Virginia and is now about to start a chapter in West Virginia.
“It’s so hard to even comprehend how far we’ve come and what we do, but I know there’s a need for what we do, and there’s nothing else really like us,” Knight said. SJGF has not only helped the children; it has been a haven for the moms of the Raindancers. Melissa Alexander, whose daughter, Julia, 10, is a Raindancer, spoke about the bond that the moms share with others involved in SJGF.
“We have Sara and lots of other friends, the board members and volunteers, that we would have never had, that we’ll have as lifelong friends and family,” Alexander said.
“It means so much that Sara is also a Raindancer mama, that she knows every single step, every emotion, everything that we experience as moms when your child is experiencing a medical crisis. That really makes a difference because it’s not just someone sympathizing with you. She is you,” she continued.
SJGF has three main fundraisers during the year that help it to fulfill its mission, Family Bingo Night in the winter and a golf tournament in the fall, and for the first time this year, a music festival in the fall. This year’s golf tournament will be on Oct. 3, and the music festival will be on Oct. 15. Both are in Haymarket.
Amy Falkofske ([email protected]) is a freelance writer and the owner/photographer of Beautiful Moments by Amy Photography. She is working on an MA in film-television with a concentration in script writing from Regent University. She lives in Bristow with her husband and two sons.