Remembering the life of Julia Grace Knight and now helping families of children with special needs

“Life isn’t about waiting for the storms to pass. it’s learning to Dance in the Rain,” was the life motto of Julia Grace Knight and her family.

Julia was diagnosed with I-cell disease when she was just a baby and overcame many obstacles in her young life by always dancing through the storms that passed through.

It was a great lesson to Sara, her mother; Jason, her father; and Cameron, her 15 year-old brother; to all those who knew her and those that heard her story; those who know anyone in her family and those who will feel the rhythm and ripples of her dance for years to come.

Sara said it was a joy to “love her”and “let her love you.” She had the doctors and nurses who treated her “wrapped around her finger” and was a “joy,” knowing to “love and be happy” in the midst of suffering.
Cameron said Julia could “light up a room just with a smile.”

Julia is described by her parents as living in the moment and forcing those around her to live in the moment as well. In our lives, we are regretful of our past and anxious about our future, but for Julia it was the moment at hand, the one right now, that meant the most. She had a way of making everyone focus on the “right now.”

Julia’s life certainly taught the world many lessons. For Jason, he learned that one never knows what is going on in someone’s life.

As a self-described near-Nascar driver, he said that he used to slow down when someone would speed up behind him and tailgate him while driving. However, after having to speed home to meet Sara and Julia at the hospital, he learned that one never knows why or to what that person is speeding.

Even now, the Knights focus on what is happening in their lives and how to continue Julia’s dance to other children and families with special needs.

Sara said that people do not know of many of the special needs in our community although the community is more than willing to give and help them.

The condition that Julia had is rare, and the Knights knew there would not be any cure for her. Jason said they never tried to raise funds as funds are used to help the most people. They estimate there are approximately 30 people who have I-cell. Instead, they are using Julia’s life dance to help other families with children with special needs.

The Sweet Julia Grace Foundation had its first annual Christmas event, only a little over a month after Julia went home. 

Merrifield Garden Center lent its Santa to the foundation to visit the Gross family in Bristow. Their baby, Margaret Grace, 8 months old, was born with a “rare chromosomal disorder” and is blind and deaf and is a “bundle of blessings and joy.”

Santa visited the family and through the Sweet Julia Grace Foundation gave the children gifts and dinner. About 100 carolers filled their yard and the neighborhood with song. The event was a first for the foundation and a true celebration of Julia’s spreading her dance to another family.

The Knights need families who need help to find them in order to continue to bless people through Julia’s life song and watch her life of love, beauty, hope, giving, grace and joy continue on in the lives of other superheroes who know how to “dance in the rain” just as Julia did.

Julia’s celebration of life was held on Saturday, Nov. 9, at Grace Life Community Church.

More information on the Sweet Julia Grace Foundation is available at http://sweetjuliagracefoundation.com/ or https://www.facebook.com/SweetJuliaGrace.

Sara can also be reached at 571-247-5176 and via email at .(JavaScript must be enabled to view this email address). To contribute to the foundation, readers can mail their donations to 12841 Braemar Village Plaza, PMB 140, Bristow, VA 20136.