MarfanLife.net | News blog

“Twelve-year-old Meaghan Truckey stands out among her sixth-grade classmates at Holy Spirit Catholic School in Great Falls.
At 5-foot-7 1/2, she’s taller than the others, but her problems are bigger than that. Despite surgery for cataracts, she has low vision. Sometimes her knees slip out of joint. She suffers from scoliosis of the spine. And, she has a heart condition.”

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“Dec. 9, 2005, will be a day for me [Dylan Rohrer] to remember for the rest of my life. This was the day that a great wish of mine came true: I met President George W. Bush.

The day started off with getting up at 6:30 a.m. and meeting at the lobby of the Hotel Washington at 7:30 a.m. for a walk over to the White House. I am not a morning person, and I was on California time, so I felt as though I was getting up at 3:30 a.m. There were two other Wish children and their families included in the visit.”

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MercuryNews.com | 02/21/2006: “’Rent,’ the film adaptation of the Tony- and Pulitzer Prize-winning Broadway musical, arrives on DVD in a two-disc edition (list price $20.99) that proves quality can win out over quantity. While the extra features are few in number, they are so substantial and thorough that viewers won’t have any complaints. … “… The set’s most substantial supplement, “No Day But Today: The Story of Rent,” is an informative, poignant feature-length documentary about the show and its creator, Jonathan Larson, who died suddenly on the night of the musical’s final dress rehearsal from a tear in a blood vessel near his heart caused by Marfan syndrome, a connective tissue disorder. …”

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“Marfan Syndrome is a genetic disorder that effects the connective tissue. Its symptoms include long, slender body shape with longer than normal appendages and other skeletal abnormalities. The most serious effect of this disorder is the incidence of an enlarged aorta and the tendency toward aneurysm and aortic dissections.

“Mrs. Mary Ellen Kobitka of Hobart is the mother to three children affected by this syndrome. ”

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“Visits to Duke Hospital are more like reunions for the Douglas family. Seven-year-old Megan is a regular MRI patient.

Megan has Marfan Syndrome, a disease of the body’s connective tissues, which include the blood vessels. Through normal screening, doctors diagnosed Megan at 5 months of age. They kept a close eye on her aorta, which doctors discovered to be large for her age.”

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“Marfan syndrome is everywhere in Mary Ellen Kobitka’s life.
Her every action is dictated by the incurable disease. She has Marfan syndrome, her three children have Marfan syndrome and her husband, who died at 44, had Marfan syndrome — a genetic disorder of connective tissue that can affect the skeleton, eyes, heart and blood vessels.”
I’m not sure the mother has Marfan also. I think the reporter may have gotten that wrong. Not sure, though. -Jeanette

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“This newest novel from Raymond Benson follows his six original James Bond novels, (as well as three James Bond film novelizations and three short-stories) the novels Evil Hours and Face Blind, as well as the author’s two recent Tom Clancy’s Splinter Cell adventures.

The synopsis for this suspense thriller (found on amazon and the author’s official site) follows:

Diane Boston lives with her Marfan syndrome-afflicted 13-year-old son in a suburb of Chicago and teaches social studies at the high school, with the students even voting her Teacher of the Year. But she has some dark secrets. Her ex-husband Greg always suspected that Diane kept things from him, but he has no idea just how right he is. When Diane’s son, David, finds a box of unmarked videotapes and watches one of them out of curiosity, he discovers that it’s a hardcore adult movie from the late 1970s. … ”

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“When people debate the greatest presidents in American history, Abraham Lincoln invariably makes the short list. Often, he tops it. His leadership, vision and strength are beyond dispute and enduring.

So too, it seems, are the man’s physical ailments, real and hypothesized.”

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“COPS were called in after vicious bullies drove a 13- year-old girl out of school just for being TALL.

Cruel playground jibes and physical attacks made 6ft 4in Caroline Stillman so ill a doc had to sign her off lessons.”

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“The parents of a 6ft 4in 13-year-old girl from Rutland have called in the police after bullies used an internet chat room to threaten her.
Caroline Stillman was taken out of Uppingham Community College in November after a bullying campaign made her ill.”

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