Claire Ruf may have lived a short life but her legacy continues to bless the lives of families impacted by congenital heart disease.
Claire was diagnosed with heterotaxy syndrome at 18 weeks gestation and passed away last year when she was 14 months old. The rare condition occurs when the heart and other organs are in the wrong place in the chest and abdomen. Many children with heterotaxy also have complex congenital heart defects (CHD).
In August 2023, Claire’s mom Kelli said the family formed the Claire the Heart Warrior Memorial Foundation to help others.
“It's a lot of work and it's very stressful," said Kelli. "We had a lot of support here in our community with our family, friends and church community. But what we realized, as we spent time in the hospital and have become part of the heart community, is that not every family has the same level of support we did.”
The foundation will host its first pickleball fundraiser May 31 and June 1 at the Oakley pickleball courts. The tournament will have women’s and men’s doubles, as well as mixed doubles. There will be different divisions and players of all ability levels are invited to sign up. Details are at clairetheheartwarrior.org. The cost is $60 per team and all funds raised by the 501(c)(3) will benefit families affected by CHD.
“And that's a really hard place to be for single parents or people without families that can help them financially or with watching other children that are at home, when you have a long-term hospital stay," said Kelli. "So we saw the need and just want to try to help those families ease some of the burden that can be placed upon you financially when you're caring for a child with a chronic illness.”
Kelli said she wants Claire to be remembered for her indomitable spirit despite battling a lifelong illness. She spent much of her life in the hospital, almost always happy, smiling and waving at visitors and staff.
“I think what I learned from Claire is that you can still be happy in hard times," she said. "None of us are exempt from trials in our life–whether that's physical trials, like Claire, or we're experiencing the loss of a loved one right now, or financial trials or mental illness. There are so many trials that we experience in our life, but those trials don't have to define us.”
And Claire the Heart Warrior Memorial Foundation hopes to lift that burden for deserving families.
