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Smith: 10-year-old Santa Rosa boy uses his art to say thank you for his health

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Waylon’s fundraising site for the Cystic Fibrosis Foundation:

http://fightcf.cff.org/site/TR?px=2649497&fr_id=7187&pg=personal

At age 10, Santa Rosa native Waylon Jones is quite good at soccer and at jujitsu. Beyond that, as grandmom Diane Keegan notes, “He’s really got a flare for art.”

I’m no art critic, but when I look at Waylon’s rendering of a pumpkin and his Picasso-esque self portrait I think, “A kid made those?”

Waylon, like most artists, paints for the joy of it. But the Proctor Terrace School fourth grader also uses his art to express gratitude for how healthy he is despite the serious disease he was born with, and to help others with the same malady.

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WAYLON LIVES with cystic fibrosis, a hereditary and potentially life-threatening condition that affects the lungs and pancreas. Though he’s taken a heap medicines and twice a day he’s hooked up to a machine that keeps his lungs clear, he now leads a mostly normal life.

He and his family are hugely thankful for a breakthrough drug, Kalydeco, that was developed through a historic partnership of the Cystic Fibrosis Foundation and Aurora Biosciences, now part of Vertex Pharmaceuticals.

Waylon was chosen to take part in clinical trials for Kalydeco that required frequent trips from Sonoma County to Seattle. The drug proved to be hugely helpful, though only to a small number of patients.

Waylon is one of them.

“It’s a miracle,” says maternal grandfather Jim Keegan, a heart transplant recipient and, as such, something of a medical phenomenon himself.

The lad’s mom, Stacy Keegan, said Kalydeco “really stopped all of his symptoms.”

Stacy said her son today takes only about half as many daily doses of medicines as he used to. Though he still must sit twice daily for treatment by an oscillating vest that loosens and thins mucus, Stacy said, “he really just sees it as an excuse to play video games!”

Only weeks ago, the FDA approved another Vertex drug, Trikafta, that’s hugely expensive but was found effective for many more cystic fibrosis patients than is Kalydeco.

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ABOUT THE ART: Of all the pieces Waylon has made at school, his mom and his dad, Todd Jones, and his grandparents especially like the self portrait in paints and the pastel still-life of an orange pumpkin.

Eager to thank the Cystic Fibrosis Foundation for its help in creating Kalydeco and for all it does for people who deal with the disease, Waylon and his clan thought to offer copies of the paintings in exchange for donations to the foundation.

They ask $40 for prints on canvas of the self portrait, $20 for small prints of the pumpkin.

“I thought we’d sell like five copies,” Stacy said. But so far, sales of Waylon’s two artworks have brought to the Cystic Fibrosis Foundation donations of about $1,600.

Anyone interested in making a contribution and receiving a copy of the art go onto Stacy’s fundraising page. Go to fightcf.cff.org, then click on the Great Strides photo, then on “Find a Walker,” then type in Stacy Keegan.

Her boy Waylon is feeling good about his art helping to advance the search for a cure to cystic fibrosis.

“It’s a great thing that he can participate and give back,” said his granddad and fellow beneficiary of advanced, 21st-century medicine.

Jim Keegan adds, “He’s just a wonderful, sweet little child. And he’s got a life ahead of him.”

You can contact Chris Smith at 707 521-5211 and chris.smith@pressdemocrat.com.

Waylon’s fundraising site for the Cystic Fibrosis Foundation:

http://fightcf.cff.org/site/TR?px=2649497&fr_id=7187&pg=personal

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