Amazing baby Jake

Jake is now using a Rockin’ Rabbit, upright wheel chair,

By Jennifer Clampet

The Times, Oct 12, 2006, Updated Oct 30, 2009

BEATING THE ODDS — Jake Dering, who will turn 2 next week, stands upright in his Rockin’ Rabbit. The $4,000 device has given Jake, who suffers from Oto-Palatal Digital Syndrome, a new level of independence.

Jaime Valdez / The Times

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TUALATIN – Jake Dering is precious. He is cute. He is lovable. And he will turn 2 on Oct. 18. But most of all, Jake is rare.

Diagnosed shortly after birth with Oto-Palatal Digital Syndrome, a disease that has affected nearly every one of Jake’s limbs – clubbed feet, webbed toes and fingers, dislocated joints and hips – Jake suffered from an underdeveloped trachea which landed him in the hospital several times because of potential respiratory failure. All of his symptoms are traits of the disease.

Jake’s parents Steve and Chellie, of Tualatin, shake their heads remembering the doctor’s diagnosis. OPD is rare. Very rare. In fact only 30 to 40 cases have been documented since 1966, when the disease was first reported. Most children with OPD don’t live past five to six months and die from respiratory failure.

Doctors originally told the Derings that Jake would likely not live to be a year old.

“We’ve blown that out of the water,” Chellie said as she looked over at her son sitting upright on the floor. One year ago, the family celebrated Jake’s miraculous milestone of his first birthday and his first pair of pants. Knee surgeries had kept his legs in casts and his mobility fairly limited.

Next week, Jake will turn 2, and the family is excited to show off Jake’s newest trick – the crawl.

At 18 months Jake had had 30 hospital stays, recalls family friend Mary Lewis. Lewis fought back tears as she described just why Jake is such an inspiration.

“There were so many times when I held my breath,” Lewis said. “But I’m not holding my breath any more. Thirty hospitalizations and he’s still here.”

From surgeries to emergency room visits, almost every day was a struggle. Steve and Chellie acknowledge that their son has known a lot of pain in his short life.

But in May, Jake’s central line was removed – a tube in his chest that had prevented him from such experiences as a normal bath or a swimming lesson. Chellie would bathe him on the kitchen counter with a sponge.

The removal of the central line marked several turning points. Since then, Jake has not returned to the hospital’s emergency room. This summer his parents and sister, Sydney, concentrated on letting Jake be a little boy.

He swam in a pool for the first time, and his mother Chellie put to the back of her mind all of the surgeries and treatments Jake has still to undergo.

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