(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 if an MRI will determine if the tumor is cancerous. This is devastating beyond words for our whole family.
Without intervention, her face will be disfigured for life and her right eye will be rendered useless. They have found a highly skilled NF surgeon in Chicago who can remove the plexiform tumor permanently and restore her eye to its proper position. The operation is set for February 3.
These are the obstacles her parents face:
1. They live in The Hague, The Netherlands with 5 children.
2. Surgery in the Netherlands won’t be available to Amelia for over a month from now in Rotterdam as the only doctor who can perform this procedure is out on leave. They have therefore advised for her to go ahead and travel to Chicago ASAP as the tumor is growing rapidly.
3. Their Dutch insurance is giving resistance about paying for their US medical bills and still are waiting on if they will cover the costs for the operation.
We simply can’t afford to wait without risking permanent damage to Amelia’s face and the loss of vision in her right eye.
PLEASE consider donating even if it be a small amount to help Amelia and her family to cover medical and travel costs as they embark on this next phase in Amelia’s little life. Every cent counts!
With deepest appreciation,