I Hate Muscular Dystrophy – Loving a Child with a Life-Altering Disease

I Hate Muscular Dystrophy Loving a Child with a Life-Altering Disease
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By then, doctors had discovered that steroids can slow muscle wasting in Duchenne boys, extending life into the twenties and sometimes beyond. The drugs have serious side effects, including severe mood alteration, weight gain, stunted growth, suppressed puberty, and increased bone fragility. Clinical trials of steroids for Duchenne were in progress, and Furlong tried to get her sons included.

But, when she was told that a placebo group would not be given the treatment, she withdrew them, rather than take the risk that one of them would not receive the drug.

Instead, she asked Tom to write a prescription for steroids. He refused, saying that they could not perform unregulated drug experiments on their children. Furlong, incensed, forged his handwriting on a prescription, but finally decided not to fill it. At the ages of fifteen and thirteen, Christopher and Patrick were fully paralyzed, except for their organs of speech and their fingers. They moved around in motorized wheelchairs using joysticks, and relied on family members and a few paid helpers to lift them onto the toilet, or from wheelchair to bed.

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Unable to raise their arms, they ate with their elbows propped on high drafting tables that their father rigged for them. Despite these difficulties, Christopher regularly ranked at the top of his class in school; Patrick concentrated on friends and dreamed of success as a gambler. When the myoblast treatment failed, they were crestfallen.

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She assured him that she had not, and shortly afterward, in , she decided to start a patient-advocacy group. To raise significant dollars, we needed to form a nonprofit. Immediately, she received a letter from the executive director of the Muscular Dystrophy Association, Robert Ross, accusing her of deliberately choosing a name that would confuse the public. The twenty or so parents who made up the group held bake sales and dinner dances and canvassed family, friends, and neighbors for donations.

In , Louis Kunkel, a research scientist at Boston University, isolated the gene implicated in Duchenne. This gene—by far the largest in the genome, with 2. The protein is found in every muscle of the body; it forms a shock absorber around the membrane that surrounds muscle cells and holds them together. Owing to errors in their genetic code, Duchenne boys do not produce dystrophin.

Over time, the cell membranes rip, and calcium floods into the cells. The immune system, mistaking the activity for an invading pathogen, attacks the cells and kills them. Muscles fail progressively throughout the body: first the large skeletal muscles of the legs and arms and trunk, then the muscles of the diaphragm, digestive tract, and heart.

Woman admits she lied about being wheelchair-bound by muscular dystrophy

Furlong asked Hoffman to address the members of Parent Project, whom she was bringing together for an information-sharing meeting in Ontario, in the spring of Hoffman, however, declined the invitation. Furlong immediately flew to Pasadena, where Anderson had an office at U. At the meeting in Ontario, Anderson who, in , was convicted of sexual abuse of a minor and is currently serving a fourteen-year prison sentence announced to a crowd of parents, patients, and scientists that he would cure Duchenne in eighteen months—a grandiose claim that almost no one in the room believed.

They were pretty amazed that parents were not hysterical, did not expect magic, but wanted to do whatever they could to help. They asked questions about the disease and about us, exploring ideas. The parents began raising money to establish a research center. The parents pledged to raise three hundred thousand dollars. Lee Sweeney, the scientific adviser to Parent Project Muscular Dystrophy, has been studying the molecular basis of muscle movement since , and is now the chairman of the Department of Physiology at the University of Pennsylvania School of Medicine.

He was engaged in gene experiments in Duchenne using mice when, in the mid-nineties, Furlong sought him out and offered funding. Often they do what Pat did, early on, which is to try to form some charity—usually in the name of the child—and they go out and raise money from their friends and other people.

He turned down her offer. Furlong has since worked with the pediatric pulmonologist Jonathan Finder to include the mechanical insufflator-exsufflator—a device that aids in coughing—in the standard care for Duchenne. Christopher was admitted to the hospital, intubated, and placed on a respirator.

His condition worsened, and, after two weeks, he died. Seven months later, Patrick, too, got a cold, and his health declined. He knew. Patrick and I could barely look eye to eye without tears. It was as if we knew a secret and if one or the other said it out loud it would come true. In the morning, he said that she should go home and shower, and asked that she get his father to spell her. But, to my surprise, if anything she came back to me even more aggressive. She was also inspired by something that Christopher said to her shortly after he and his brother first received their diagnosis of Duchenne.

Furlong had been trying for years to make headway in Washington. Harold Varmus, the director of the agency. In , after six years of appeals, she received a commitment from the N. But when she told Sweeney about the workshop he was unimpressed. Furlong had recently met a Washington lobbyist named Joel Wood, who had a son with Duchenne.

Furlong and others from Parent Project worked with the lobbyists on a proposed bill that would compel the N. Write a Review. You will be notified of price drops for the following product. Submit your email address below to get alerts when the price of this product changes. You can purchase this product on PriceCheck's Marketplace by clicking on "Add to Cart" and completing the payment process.

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