Northwest NEWS

December 21, 1998

Features

Rare disease causes hardship for local family

by Deborah Stone, features writer

   Prior to last spring, Zachary Johnson of Bothell was a typically active fifteen-year-old who especially enjoyed playing football and baseball for his local junior high school. In April of '98, he had routine surgery to remove his appendix, but following the procedure, his legs swelled, causing him considerable discomfort.

   Various tests were done and doctors discovered that a blood clot was the source of the swelling. The clot was extensive and went from Zach's groin area all the way to his right foot. Further testing resulted in a diagnosis of Activated Protein C Resistance, a rare disease only recently discovered in 1994.

   Apparently, the appendix surgery had triggered this condition in Zach. Within a very short time, the clot grew in size, and over the summer it continued to spread, eventually reaching his heart.

   Daily doses of blood thinners were administered, but this didn't appear to work. Doctors advised a special surgery involving opening and cleaning out the veins for increased circulation. They told Zach and his mother, Becky Johnson, that this surgery is life-saving and if Zach didn't have the operation, his major organs could clot off and he could possibly die.

   Currently, this surgery is only being done at Stanford Medical Center in California. It has been successful on the fifteen or so patients who have previously undergone the procedure, so the prognosis for Zach is favorable, if he has the operation.

   Doctors at Stanford will have to shut Zach's circulation down to do the surgery and the whole procedure takes approximately twelve hours to complete. If it is successful, he will be able to live a normal life, but will still need to continue to take blood thinners.

   Becky and Zach went to Stanford this past October with the understanding that their insurance company, Regence Blue Shield, had approved the surgery. At the last minute, the company informed them that the operation was rejected.

   "Zach and I were devastated," said Becky. "They told me it was denied because it was considered an 'investigative' procedure. I was in tears, but the company was unwilling to change their mind. We had to return home to face the day-to-day fears once again. Zach ended up in ICU because of problems with the clot getting to his lungs. I decided to appeal to my family, friends, neighbors, and people of goodwill to help me in my campaign to raise sufficient funds to offset the cost of the surgery."

   Becky is a single mom with four children between the ages of twelve and nineteen, and she went from working full-time to part-time and then had to quit completely in order to help take care of her son.

   For Zach, being on bed rest off and on since last spring has been frustrating and difficult. "My leg is always hurting and I have to stay in bed most of the time," says Zach. "The doctors are afraid that the clots will go to my brain if I move around a lot. It's been boring being in bed and I miss school and my friends and doing sports. I just want to have the surgery and get better."

   Zach's siblings, two brothers and a sister, have all been helpful in this time of crisis, but the family has certainly been under considerable strain and hardship. "I just have to take one day at a time because it's all I can deal with," commented Becky. "Zach has been incredible throughout it all. He's such a sweet, loving, and giving boy."

   This story, however, will hopefully have a happy ending. Just recently, Regence Blue Shield decided to cover part of the costs for the surgery, based on additional information from doctors.

   Zach and his mother have already flown down to Stanford for the operation, and Becky has asked the community to pray for a successful outcome for Zach. Meeting her part of the financial obligations will still be very tough, so she appreciates any donations towards this cause.

   Tax-deductible contributions can be sent to: Wells Fargo Bank, Attention: Friends of Zachary Johnson, Account #6013 575402.