Parker comes home and the search for a liver donor begins

By on June 6, 2012

By: TIFFANY WOODALL Review Staff twoodall.eph@lnpnews.com, Staff Writer



Ephrata junior Parker Harley (center) is shown at the special prom thrown for him at Johns Hopkins on May 26, along with his parents, Stephanie and Jack. He returned to Ephrata on Tuesday.

"It’s just been absolutely stunning how the town has just swelled to support us in all this, and we are really grateful," said Jack Harley Monday evening as he reflected on the outpouring of love for his son Parker and their family. "We really, sincerely appreciate all of the thoughts and prayers and cards and calls that have been coming our way."

Last week’s article about Parker’s prom, which had been shared on Facebook, elicited responses from friends around the country who want to help, said Jack.

"It’s just been incredible," he said. "I can’t even start to describe it. We are just absolutely flabbergasted at the support we’ve got, it’s wonderful."

That’s not the only good news to share. Parker came home this Tuesday.

"What he’s in there for is not so much the disease itself, but the complications from the procedures he’s had to mitigate the disease," said Jack. A recent gall bladder surgery resulted in bile leaking into Parker’s abdomen, which kept him hospitalized for four weeks.

The problem remains that Parker’s rare liver disease has no treatment. The only option is a liver transplant, said Jack. However, it’s impossible to know when that transplant will need to happen.

"That’s the frustration," said Jack. "It’s inevitable, but we don’t know when."

The U.S. Department of Health and Human Services organ donation site states that "candidates who need a liver transplant are assigned a MELD or PELD score (Model for End-Stage Liver Disease or Pediatric End-Stage Liver Disease) that indicates how urgently they need the organ." Because Parker’s disease affects the "duct work" –pancreas, spleen and gall bladder — more than the liver itself, Parker’s MELD score prevents him from being placed on the donor waiting list.

"He won’t score high enough on the MELD score to get the donor liver, maybe ever, but in the meantime this disease will take its toll on him from the back side until it’s too late," said Jack.

Even for those who make the list, the battle isn’t over. According to organdonor.gov, the median national waiting time for a liver is 361 days.

"The ideal candidate is a relative, but we have few of those that qualify," said Jack. "From here on out, it’s really, live your life and watch. Be aware and attentive of what’s going on. We’re really at the initial stages of this. We’re really just learning this as we go."

The first item on the family agenda was to get Parker home, said Jack, and now that he’s back, they’ll begin researching the organ donation process and what it entails.

Parker’s donor will be someone deemed a suitable match based on blood tests and tissue samples. Information on organ donation is available at organdonor.gov. The National Living Donor Assistance Center (livingdonorassistance.org) provides additional information and resources.

Multiple benefits will be held for Parker during the upcoming months. The first of these is a benefit preview of "Tommy" at Ephrata Performing Arts Center the Wednesday before opening night, July 18, at 7:30 p.m. The ticket price is $30, and local restaurants will be donating food items.

The Harley family is planning a fund-raising event for Sept. 2 at Ephrata Elks, and Jack hopes to have a stand from UNOS (United Network for Organ Sharing) or Gift of Life with information about organ donation. Mark the calendar for this family fun day, which will raise money for Parker’s health care expenses. More PARKER, page A23

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