Jake is now using a Rockin' Rabbit, upright wheel chair,
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.
In November he will undergo surgery on his hands to correct the webbing of his ring and middle fingers. Doctors had discussed surgery to correct his hips, which are dislocated, but the final conclusion was not to perform surgery.
Doctors are also concerned that Jake may need additional surgeries on his knees.
Transitioning from a carefree summer back to a schedule of doctors' visits and appointments and calls with the insurance company wasn't easy, Chellie admitted.
Jake smiled and squirmed a little as he sat in his Rockin' Rabbit, a standing wheel chair device that allows Jake to move around the house and, for the first time, the grocery store.
Jake's physical limits have not seemed to have affected his cognitive development, Chellie and Steve said as they watched their son play on the living room floor.
'He instinctively knew how to move it,' Chellie said of Jake's ability to maneuver the Rockin' Rabbit, controlling direction and speed by turning the wheels.
But the Derings are still unsure of what the future holds. The family's Web site, www.jakesake.com, was created as a way to reach out and research the options for Jake.
'We thought maybe somebody might contact us with a similar case and advocate what to do with his treatment,' Chellie said. But aside from words of encouragement, the Derings have not received any contact from other families experiencing the OPD syndrome.
'I think it's because there's not anyone else out there,' Chellie added.
'It's astounding how rare he is,' Steve said of his son.
The family has planned a small party for to celebrate Jake's birthday. A Superman themed cake, invitations and decorations will surround the little boy whose determination and smile have affected everyone who has ever laid eyes on him.
'He doesn't even get how hard life is,' Lewis said, again fighting off tears. 'He beat the odds.'
And even as Jake continues to make progress in physical therapy, learning how to crawl and lift himself up into an upright position, Chellie knows Jake still has more to overcome to reach the ultimate goal of walking.
On the family's Web site, Chellie wrote, 'My fear is that there is no comparison to Jake's case… But the bottom line is we believe he will walk, and I know he does, too.'