HURRICANE, W.Va. — A Northern Virginia-based nonprofit that is helping to change the lives of families with children suffering from medical disorders and illnesses is starting to grow its roots here in West Virginia.

Sara Knight, Founder of the Sweet Julia Grace Foundation came on 580 Live with Dave Allen to talk about the foundation and their journey of expansion into the Mountain State.

Knight said SJGF was started in 2014 as a way to honor the memory of her daughter, Julia and carry on Julia’s legacy.

Julia Grace Knight

“We always said that she truly taught us that life is not about waiting for the storms to pass, it’s about learning to dance in the rain, and so no matter what she went through, she always had a smile on her face and in the midst of everything she just really taught us what life was about,” said Knight.

Julia was born in 2002 and was diagnosed with an extremely rare genetic disorder known as I-Cell, which affects multiple organ systems within the body.

Doctors told Sarah and her husband that Julia probably only had about three to four years to live– she ended up living for 12.

After Julia passed away in 2013, Sara became inspired to help other children and families facing similar circumstances, thus the Sweet Julia Grace Foundation was started.

Knight said that they help kids facing a wide range of different diseases, disorders, or conditions by granting them with a wish or giving them special gifts that bring them joy during the medical hardships they are going through.

She said they also help the child’s family too by paying for some of the child’s medical expenses or other expenses the family may be facing in the difficult time for them as well.

Ultimately, Knight said the organization brings all of the families together into a tight knit community of people who can relate to one another and support each other throughout every step of their children’s journey.

She said they call all of the children they help “rain dancers” based on the previous quote that Knight had mentioned and one that had become very meaningful to her and her family throughout Julia’s own journey. The quote is, “Life is not about waiting for the storms to pass, it’s about learning to dance in the rain.”

Knight said the quote has now become tightly woven into the fabric of what the organization represents. She said all of the children they help truly embody what it means to be a rain dancer.

“These kids are resilient and brave and courageous, and their siblings are and their families are, and we basically come alongside them and say ‘hey, we’re here to help what can we do,’ and it’s kids who are going through medical crisis, have complex special needs,” she said.

She said like many of the kids they support, Julia was able to find the joy and beauty in life despite the immense challenges that came with her disorder.

Sara Knight

“She truly changed my life, she changed everybody’s life that was around her,” Knight said. “She had this smile that would light up a room, and no matter if she was in the hospital or at home, you would get the same smile.”

Knight, a Putnam County native, now lives in Virginia–near her Manassas-based organization– but she said they decided to expand the organization to her home state of West Virginia in 2018 as it’s still very near and dear to her, and she knew that there were a lot of families here that needed the support it provides.

She said they mainly help families in the Putnam-Kanawha county areas but they have also helped those across the state as the need has been so great here.

Knight said many of the families find their organization through referrals, particularly through Milestones Physical Therapy in Teays Valley.

She said often families get told that their medical insurance won’t cover certain services or special equipment that their child needs– and that’s when SJGF steps in.

Knight said they not only pay for those services or equipment the child needs, but they often do so within the same day the family reaches out to ask them, whereas they might have to wait months to either get approved or denied of that need through insurance.

She talked about a specific scenario of this happening to one of the little boys and his family who are a part of the organization.

“Just specifically, this week, I’m working with a family who lives in Putnam County and their son needs a special-needs activity chair, and those start at $6,000,” she said. “It’s a special customized chair that will allow the little boy to sit and draw, and sit and eat, and do all of things that he wants to do, but the family can’t afford it and insurance denied it.”

She said SJGF then stepped in and ordered the chair for the little boy and his family.

Knight said while they do a lot of the organization’s fundraising to buy such needs for children and their families in Virginia, they’re gearing up to host their very first fundraiser here in West Virginia later this year. She said they then also plan to host a second fundraiser in the state later this year as well following the initial one.

Both of the fundraisers are set to be held at Valley Park in Hurricane.

The first is in partnership with Milestones Physical Therapy. It will be a 5K race on August 10 called the Walk-N-Roll and and 5K for SJGF.

The second will be the Fall MusicFest and Choppers Raffle in partnership with the Putnam County Chamber of Commerce and Pedro & Betty’s Big Revival on October 20.

You can learn more about these fundraising events by going to SJGF’s website and finding the specific page for WV under their blog section.

Knight encourages everyone to come out and support the organization and the families that make it up, because she said it’s those same families and supporters that keep SJGF alive and working to help meet one child’s need at a time.

“People in the community become a partner and friend with what we’re doing and become loyal to that, and we rely on that, we rely on volunteers, we rely on people who want to sponsor an event, who want to make a monthly donation, people just see these kids and they want to be a part of changing their lives,” Knight said.

SJGF also provides a monthly donation of 30 Parent Care Packages to Charleston Area Medical Center Women and Children’s Hospital. Partners of the organization meet regularly to host a packing party and fill tote bags full of essentials, snacks, toiletries, and comfort items geared toward tired parents helping to fight to save their child’s life.

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