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Valley News Article 4/19/2007

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 Photo Caption: Pat Schmidt with her son, Bob Sutter, who died in April 2005 of complications from Duchenne muscular distrophy. He was 26.  Schmidt has become an advocate for organ donation.

Photo Credit: Family Photograph

VALLEY NEWS  Date: 04/19/2007    Edition: Daily   

 

Organ Donors Find Advocate

By David Corriveau

Valley News Staff Writer

 

   Newport, N.H. -- Two years ago today, Patricia Schmidt agreed to take her son, Bob Sutter, off life support and to donate five of his organs for transplants.

   The next hard decision came 11 months later, when the New England Organ Bank asked the Newport resident to describe her experience to a gathering of several dozen nurses and social workers at Dartmouth-Hitchcock Medical Center.

   "I was pleased and honored," Schmidt recalled recently, "but I was also scared to death."

   Then she remembered the tiny, decorative box that she'd bought shortly after her son's cremation, to keep some of his ashes. It's turquoise -- his favorite color -- with butterflies -- the symbol for organ donation.

   "While I was talking up there, he was in my hand," Schmidt said.

"That gave me the strength."

   It also started her on a mission. When she's not catering weddings and other gatherings with her husband, Rolf Schmidt, or spending time with the rest of her family, she's speaking to any group and any individual who will listen about how two of her son's corneas and his two kidneys are giving four different people a new lease on life.

   "Pat sharing her story and Bob's story has been very effective,"

Jennifer Cray, community education manager for the Newton, Mass.-based organ bank, said yesterday. "A lot of people haven't heard about donation at a personal level. She really inspires people to take that extra step, to go and sign up."

   And you don't need to ask Schmidt to talk.

   "The typical volunteer waits for you to come to them," Cray said.

"Now, she calls me. This is a way for her to honor his memory and his fight.

   "She's going to hold onto that -- in a positive way."

   ---

   At age 3 ½, Sutter's doctors diagnosed him with a form of muscular dystrophy called Duchenne. According to the Muscular Dystrophy Association Web site, the disease robs the body of a protein called dystrophin, weakening muscles first in the hips, the pelvic area, the thighs and the shoulders.

   "At 11 ½, I had to have my heel cords cut," Bob wrote in 2003, in the introduction to his Web site. "I walked with a walker, and as the disease progressed and I got weaker, I began using a manual wheelchair.

Eventually, at 15, I got an electric wheelchair equipped with a joystick, which enabled me to drive it myself."

   As a high schooler in Texas, he competed in Special Olympics, winning medals at the local, regional and statewide levels, and he attended the senior prom. But by the mid-1990s, the disease was weakening the muscles in his heart and lungs. Living at home with his mother and stepfather, he needed more and more nursing care, including help with shaving, tooth-brushing and bathing.

   Still, he took classes three days a week at Newport High School, where he set up his first Web site. After school, he volunteered at the Sullivan County Nursing Home, playing cards and bingo with residents.

And in September of 2000, he gave away his sister, Jenn, at her wedding.

   "All the ladies danced with me!" he wrote on his Web site. "I was a 'dancing fool' that night, and we had lots of fun."

   ---

   On April 16, 2005, Bob suffered a heart attack and never regained consciousness. Two days later, his mother and other family members met with doctors at DHMC to puzzle out the next step. Schmidt brought along a favorite picture of Bob in front of a Spiderman poster.

   "I wanted to tell the doctors, 'That's Bob -- smiling, with that devilish look in his eye,' " Schmidt recalled. "If I couldn't have that Bob back, it was over."

   At 3:15 p.m. on April 18, after consulting with her family, Schmidt gave the go-ahead to disconnect Bob's ventilator. At 4 p.m., Karen Lord, the New England Organ Bank's DHMC donation specialist, came into the room with the paperwork -- and stayed with them through the night.

   At 1 a.m., transplant teams arrived from Boston -- one to harvest Bob's corneas, one his kidneys, one his liver.

   With the family sitting around Bob's bed in a semicircle, a respiratory therapist shut off the ventilator and a nurse administered morphine.

   "Within 10 minutes, Bob was gone," Schmidt said.

   Gone, but not forgotten: Six weeks later, the organ bank told Schmidt that while Bob's liver had proven not viable for transplant, one man and one woman each had received a cornea from Bob, and one man and one woman each a kidney. And just before Labor Day, the bank forwarded a letter from one of the kidney recipients, who had gone on dialysis in November

2003 to fight an end-stage renal disease.

   "I went on the transplant list in May 2004 and expected to wait 4-5 years," the anonymous recipient wrote. "To receive this kidney in just

11 months was nothing short of a miracle."

   The prognosis was less dire for a former Marine from New Mexico named Justin, who was battling a hereditary eye disease that thinned his corneas. But he was just as grateful for the cornea that surgeons transplanted into his left eye nine days after Bob died.

   "I have put Bob's picture in our picture from of our close friends and relatives," Justin wrote in one e-mail to Schmidt. "When anybody asks, they will know who Bob is."

   Ask Pat Schmidt, and she'll tell you, too. "I never thought I would be doing this," she said. "Public speaking? About something as personal as this? I'd have said you were nuts.

   "Now, I feel like this is what I'm supposed to be doing."

   On the Net:

   Information about organ donation: www.neob.org and at www.unos.org

   David Corriveau can be reached at dcorriveau@vnews.com or (603) 727-3210.

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