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rare disease
"If youve ever watched a beloved suffer from something that you could not control, that has no cure or end in sight and youve tried almost everything you know what I mean."
"For seven years of his life, the unknown disease slowly robbed my son of his hearing, ability to walk, and control of his hands and arms."
"I hated every single thing about this insidious disease ... I would have given anything my home, my limbs, my life to banish it. But its tentacles were too strong."
'Give her time and shell surely catch up,' they said. 'Shell be fine.' ... When Dalia was 9, she lost her ability to walk, talk, eat, and breathe without a ventilator."
WHAT'S HAPPENING
"This is Rare Disease Week and I learned the hard way ... that most medical folks haven't encountered them and simply wont be able to help when issues arise."
Two-year-old Maxwell Freed has a rare genetic disorder. His mother needs $1 million to save him.
Amber Olsen is racing against time to fund a gene therapy that might save her dying 5-year-old from a rare genetic disease.
The Beauty of Rare project also shows what it's like to care for someone with a rare condition.
A diagnosis like mine is only the beginning of an endless racetrack.
"Keep telling your story and eventually someone will listen."
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