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Boy with neurofibromatosis brain tumour defies the odds

(Reprinted from the Standard Freeholder, Ontario, Cananda)

Devon - Boy with neurofibromatosis brain tumour defies the oddsBoy with brain tumour defies the odds

Trevor Pritchard
Local News – Saturday, May 26, 2007 @ 08:00

On the rare occasions he’s not giggling or laughing, it’s apparent five-year-old Devon Payette’s speech is slightly garbled.

His bright red hair is shaved close to his skull, where he has a four-inch scar, and he stumbles slightly as he walks – possibly the result of being blind in one eye. Continue reading Boy with neurofibromatosis brain tumour defies the odds

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Meet Reggie Bibbs & neurofibromatosis (Video)

Meet Reggie Bibbs & neurofibromatosisReggie Bibbs discusses his life growing up with neurofibromatosis and how people react differently to him since launching his “Just Ask” campaign.

CLICK HERE

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Hunter has neurofibromatosis (Video)

Hunter Cavanaugh has neurofibromatosisMeet a brave 5-year-old boy battling neurofibromatosis mistakenly thought to be “the elephant man’s disease.” But we all know John Merrick had proteus syndrome. Hunter has NF.

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Minerva and Robert Terrill’s Story (Video)

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Raising awareness of the disease their daughter has been fighting since she was 4 years old has been a top priority for Minerva and Bob Terrill of Dallas. Denise Terrill, now 29, has neurofibromatosis, a disease that has caused tumors to grow along her central nervous system, severely damaging her brain stem.

Dr. Bob Terrill, Denise’s father and a dermatologist, diagnosed his daughter’s disease when she was a toddler. Since then, Denise has endured 18 major surgeries, the first of which occurred in 1990 and resulted in her hearing loss. Confined to her bed for almost 10 years, she has lost sight in one eye. She requires a ventilator to breathe and receives nourishment through a feeding tube. Continue reading Minerva and Robert Terrill’s Story (Video)

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Disfigured man with neurofibromatosis launches “Just Ask!” campaign!

Reggie Bibbs has lived with neurofibromatosis (NF) all his life. NF causes tumors to grow throughout the body sometimes causing pain, disfigurement and even death. Because of his disfigurement, Reggie has led a fairly sheltered life leaving the house only to go to places where people knew him. Well, until now!

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