Gwendolyn Strong, 7, of Santa Barbara died over the weekend, with her parents at her side, after living her whole life with a disease called spinal muscular atrophy. (Contributed photo)

Gwendolyn Strong, the 7-year-old Santa Barbara girl who was the inspiration behind the Gwendolyn Strong Foundation, died over the weekend, and her family is grieving her loss.

Strong was born with a disease called spinal muscular atrophy, or SMA, and her parents, Bill and Victoria Strong, started a foundation after she was born to reach out to other families of children with SMA and help fund research for a cure.

One in every 40 people carry the gene, and the group has also been working to raise awareness about prenatal genetic screening.

Noozhawk first wrote about Gwendolyn and the Strong family in 2008, when Gwendolyn was just 10 months old and Bill and Victoria had begun gathering signatures for congressional action for funding for SMA research.

Strong died in the early morning hours on Saturday, with her parents by her side.

“We’re missing Gwendolyn, but at peace with her passing,” Bill Strong told Noozhawk Monday in an email. “She was an incredible little girl loved by many.”

Victoria wrote in a moving blog post that the family feels fortunate to have had Gwendolyn in their lives for almost eight years.

“We are filled with gratitude for that time. For all the many memories that we know will now carry us through,” she said.

Victoria wrote that the Gwendolyn had been struggling in the last month, but they had thought she would be able to recover, and chronicled some of the special times they had been able to spend as a family, including Gwendolyn swimming with her dad while she wore a mermaid tail and going to Disneyland together.

Gwendolyn began having fevers, however, and the family noticed that the young girl was not herself, even though tests and x-rays showed that she wasn’t sick.

The family detailed Gwendolyn’s last moments on their blog and wrote about how they went into her room and comforted her.

“We told her it was okay to let go,” Victoria wrote. “That we will always love her. Her gaze softened. And we felt a peacefulness run through her.  We talked to her the whole time and told her we will always be proud of her. We talked to her about all the special people who were waiting for her and ready to dance. I sang to her and Bill talked to her softly. We held her hands and rubbed her hair. And reminded her what an amazing gift she has always been.

“She was so incredibly calm. She never struggled.We hugged her and kissed her and held her and talked to her until we heard her heart stop as she slipped peacefully out of this world.”

Strong told Noozhawk that the family will be holding a public celebration of Gwendolyn’s life on Sunday, Aug. 2 at 3 p.m. The event will be held at Trinity Episcopal Church at 1500 State Street in Santa Barbara.

In lieu of flowers, the family is requesting tax-deductible donations be made to the Gwendolyn Strong Memorial Fund through the Gwendolyn Strong Foundation. 

“We’ll be doing something very special to honor her life,” Strong said.

Noozhawk staff writer Lara Cooper can be reached at lcooper@noozhawk.com. Follow Noozhawk on Twitter: @noozhawk, @NoozhawkNews and @NoozhawkBiz. Connect with Noozhawk on Facebook.

Lara Cooper, Noozhawk Staff Writer | @laraanncooper

— Noozhawk staff writer Lara Cooper can be reached at lcooper@noozhawk.com. Follow Noozhawk on Twitter: @noozhawk, @NoozhawkNews and @NoozhawkBiz. Connect with Noozhawk on Facebook.