(door Tanya Uyleman Broekman)
AMSTERDAM-NOIR-My beautiful niece Amelia was born with a genetic condition called Neurofibromatosis Type 1 (NF1).
NF1 occurs in 1 in every 3,000 to 4,000 people worldwide.
In short, tumors can grow anywhere in the body along the nervous system.
They told the family that sooner or later Amelia would need an amputation and that tumors would most likely appear–potentially causing blindness, deafness, and premature death.
At 1 1/2 years old, Amelia underwent a sucessful below-the-knee amputation. When she turned 2, an MRI revealed first one optic glioma (a tumor surrounding her left optic nerve which can cause blindness) and then a second optic glioma on her right optic nerve a few months later.
* Over the last month, a tumor in her eyelid called an orbitotemporal neurofibroma, has caused her eye to be pushed forward and downward into her lower eyelid. We are all waiting for results…
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