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Article Courtesy of Des Plaines Journal

Wednesday, August 15, 2001

Fighting For His Life


 There may be no greater love than the love that parents feel for their own child and most people will do anything they can to make sure their child will live a happy and healthy life.

 As time is slipping away, the Pietrowski family is continuing to do whatever they possibly can for their 10-year-old son, Paul, who is suffering from Duchenne Muscular Dystrophy. The experimental procedure, a myoblast transfer of 50 billion cells, is scheduled to take place on Oct. 25 in Seoul, Korea, and is considered to be the family's only hope.

 "He's still walking, but he's weak," said Jarek Nowik, a good friend of Darek Pietrowski, Paul's father. According to Nowik, Paul can not stand up by himself and he often falls down.

 "There's no other treatment," said Nowik, referring to the myoblast transfer, which offers no guarantees. The family believes the procedure is the only hope for Paul to regain muscle strength and live longer.

 "Right now, the doctor is saying that it will slow down the process," said Nowik. "Darek says he trusts him." According to Nowik, medical scientist Dr. Peter Law does not promise that Paul will be walking or running again, but the family will be extremely happy if Paul can gain muscle strength, which Law believes will happen. Nowik said that the family hopes that the myoblast transfer will provide Paul with strength, and hopefully in that period of time, there will be more medical advancements that will keep him alive. Currently, statistics show that children afflicted with Duchenne Muscular Dystrophy are unlikely to live beyond their twenties.

"He has a good chance," said Law, a former neurology professor at the University of Tennessee. He said after the procedure, Paul will have an increase in muscle function and his breathing capacity will improve. "He will be able to walk better and will not fall as much."

 "One can lengthen their life span," said Law. He added that without the treatment, most children with Duchenne Muscular Dystrophy will die between the ages of 15-18. He said that it becomes difficult for many patients to breath. With the procedure, however, Law said that he's seen many people live past their 20s.

 In the past 10 years, Law said that he's worked with over 230 cases and out of those cases, 75% of the families reported that the treatment has helped them. According to Law, in scientific trials, which involves tests of muscle function and cell structure analysis, more than 95% of the cases showed improvement. Law said that he presented these statistics to the Food and Drug Administration (FDA).

 Although Law cannot offer any guarantees, people who have received the exact same procedure that Paul hopes to receive, and their family members, say the procedure has truly improved their quality of life.

 "There's no question that it has helped my son," said David Page. David's son, Nicholas, 18, is suffering with Duchenne Muscular Dystrophy just like Paul. When he was between the ages of 14-16, he received three myoblast transplants and Mr. Page said that his son has more muscle movement, can move his hands easier and breathes better after the procedure. Ever since the FDA did not allow the procedure to take place in the United States, due to failure to meet certain FDA regulations, Page said that his son has been doing worse without the transplants.

 "We're certainly behind Dr. Law," said Page. Page and his family left the United Kingdom to come to the United States, in order to receive Dr. Law's treatment.

 "As parents, we know our children better than the doctors," said Page. "I am pretty sure my son will live longer."

 "Would I have done this again? Yes. In a minute," said Diana Lynn, who is suffering from Limbgirdel Muscular Dystrophy.

 "It gave me more energy," said Lynn. "I was really going down hill."

 According to Lynn, before the procedure, all she wanted to do was sleep. Afterward, however, "the little things" improved for her. For example, she can now put away her dishes and cook easier.

 "I know each time they do it, they improve it a little bit more," said Lynn, referring to the procedure. As for Law, she said that "he's very knowledgeable."

 "He wants to do it again," said Karis Plemmons, the wife of David Plemmons, who is suffering from Beckers Muscular Dystrophy.

"He gained 30% of his strength back," she said. "He's been doing really well. It's well worth it."

 According to Karis, David can now take 70 steps with assistance, which is more than he's ever taken before the procedure. In addition, he now can roll on his back in bed, instead of having to remain on his side.

Another success story is from an 18-year-old boy suffering from Duchenne Muscular Dystrophy in Poland who had the procedure done this past October and can now stand on his own for a while and make his own breakfast. The Pietrowski family read about the boy in a Polish newspaper and his story gave them a spark of hope.

"The boy really needs the help and time is running out," said Lenny Thorne, a friend of the Pietrowski's, who started the Paul Pietrowksi Foundation.

 According to Thorne, negative assumptions about Law and the procedure, in recent news, has hurt the foundation as well as the Pietrowski family, who is only concerned about helping their young son.

 "We have never injected contaminated cells into any human being," said Law. "They never even proved the cells were contaminated."

 According to Law, at the time the FDA "questioned the sterility" of the procedure, a gene therapist at the University of Pennsylvania was injecting viruses into patients and many people died as a result. "They related us to them. It's not fair to us."

 According to a letter from the FDA to Law, there was "questionable sterility" and contamination in the batches of product from which the myoblast cells were manufactured and there were other concerns, such as improper documentation. As a result, the FDA stopped supporting Law. Law insists that he has never "injected contaminated cells" into a human being. Thorne said that there has never been any criminal investigations or complaints against Law. According to National Chairman of the Medical Advisory Committee of the Muscular Dystrophy Association Leon Charash, who has known Law for years, Law has never made anyone ill or harmed anyone.

"It's 100% fatal," said Charash, referring to Muscular Dystrophy. Charash has been chairman for MDA for more than 30 years and has known Law since 1989.

 "I think he's a very bright scientist. I consider him a friend," said Charash. "The Law I know would not do this for money."

 Although Charash does not believe anyone has ever been harmed by Law's procedure, he said "unfortunately" he has not seen any objective proof that children who need wheel chairs will one day walk again.

 "The Muscular Dystrophy Association has spent billions of dollars trying to find a cure," said Thorne. "They are not going to support someone not in the mainstream," referring to Law.

 Although he has not seen any objective proof, he does understand the strong and painful emotions of the families who may lose their child and he does not deny that the quality of life of certain people may have improved and that they may feel better after the procedure.

 "I don't know what I would do," said Charash, placing himself in the Pietrowskis difficult position for a moment, in which they feel the procedure is there only hope. He admitted that if his own daughter believed that the myoblast procedure was the only hope for his grandchild and was asking for money, he would most likely give her the money for the procedure.

 "It's a very touchy business," said Charash. "We're dealing with desperation."

 Even after recent controversy, the city of Des Plaines has continued to be supportive and help fight for Paul's young life.

 "I want to thank the city of Des Plaines," said Thorne.

 Recently, a $5,000 donation was made by Cysperciam Fathers church in Willow Springs, IL. Nowik wanted to mention and recognize Roman Karp, of Des Plaines, because he was the person who went to the church and asked them for the donation.

 In addition, the Sienko family donated $1,000, Teresa Lemanska donated $1,000, Amglo Kemlite Labs donated $304 and the Schafer family donated $103.63. The Westfall family gave a donation over $100 and received the free spring and fall gutter cleaning that Why Not Aluminum offers with a donation over $100. Diane Thorne, co-founder of the Paul Pietrowski Foundation, was delighted to see that the Westfall family donated their free gutter cleanings to a needy senior at the Des Plaines Senior Center. As a result, the Senior Center plans to give back to the community by writing a news letter about 10-year-old Paul. Approximately $28,000 has been raised for Paul.

 In order to help save Paul, on Sept. 21, at 7 p.m., Aetna Bearing Co. will hold a dinner dance at Manzo's Banquets in Des plaines. Tickets will be sold at $40 and there will be a cash bar as well. If people are interested, they can call Karen at 773-292-9528. According to Mrs. Thorne, there will also be a Fun Fair at North School, which is Paul's school, on Sept. 29.

The other ill people who have improved after the myoblast transfer provide inspiration and hope for Paul and his family, despite the controversy over the procedure. Nothing changes the fact that Paul is dying and that the Pietrowskis will do whatever they possibly can to help their "sweet and gentle" little boy, who continues to have a hopeful heart.

If people would like to help Paul and his family, they can call the Paul Pietrowski Foundation at 879-1400 or Why Not Aluminum, Des Plaines, at 635-3088. Also, checks can be sent to the U.S. Bank in care of the Paul Pietrowski Foundation, 750 Lee St., Des Plaines, 60016 and the account number is 199370110660. Donations can also be made in care of Why Not Aluminum, 1582 E. Oakwood, Des Plaines, 60016. More information can be found at www.savepaul.org.