September 23, 2008

Bailey gets his coolest wish

Back-yard swimming pool will help fifth grader in his fight against cystinosis.

FULLERTON No more front-yard sprinklers or wading pools for Bailey and his buddies.

While Bailey, 10, helped lug a big fire hose, Fullerton firefighters filled a 9,000-gallon, above-ground pool Friday in the back yard of Bailey's west Fullerton home.

The pool and landscaping were arranged by the Make-A-Wish Foundation in Tustin as both a therapeutic and fun surprise for the fifth-grader, who suffers from one of the world's rarest diseases – cystinosis.

"This is awesome," Bailey said before cautiously stepping into the cold water instead of carrying through with his pre-planned cannonball.

His pals followed, initiating what will become the neighborhood magnet.

"This will be the hangout," predicted Albert Castaneda, 13.

The cool pool is just the right medicine for the metabolic disease that keeps the body temperature at continuously high levels. An amino acid, cystine, accumulates in different body organs causing multiple complications.

Only 500 children in the United States and 2,000 children worldwide suffer from the genetic malady.

Bailey's mother, Jessica DeDio, contacted Make-A-Wish. Volunteers Kelly H. Williamson and Pam Miller conducted interviews with the family to make sure it was the boy's wish – not the parent's – for the pool.

"His first wish was a dirt bike, but Make-A-Wish won't allow any motorized vehicles," DeDio said. "The pool is perfect."

Bailey, whose last name cannot be used because of Make-A-Wish restrictions, started his surprise "Wish Day" with firefighters, who let him ride aboard a big red engine. All smiles, the redhead was taken to a local restaurant where he ordered a chicken-fried steak breakfast.

When he returned, Secard Pools installers were putting up the big vinyl pool, and Home Depot of Brea workers started unloading turf and plants for the back yard.

"Our yard has always been dirt so Bailey could ride his Go-Kart," dad Jay DeDio said. "This is so much better."

Jessica DeDio said her son misses a lot of school because of numerous doctor visits and stomach aches caused by the many prescribed medicines.

"He's always hot and thirsty, especially when he has to get up every night for a full dose of medicine," she said. "And he has to have eye drops 12 times a day."

Bailey was diagnosed at 18 months after his parents noticed he wasn't eating and was lethargic most of the time.

"It took a long time before doctors at Children's Hospital of Orange County identified the disease," Bailey's mother said.

Today, she praises Natalie's Wish division of the Cystinosis Research Foundation for giving 100 percent of its donations to research for a cure, and staging numerous fundraisers in Orange County. And she's thankful for Make-A-Wish, which fulfills an average 350 wishes in its Orange, Riverside and San Bernardino areas.

While his mother chatted with foundation volunteers, Bailey told his friends, "This is the best wish I've ever had."

His next wish?

"I really want to be a professional dirt bike rider," he said.